Sunday, March 23, 2014

One Crazy Ride

This week has been one crazy ride for us. As you know we’ve been having issues with frequent visits from the MTX Monster. Well, unfortunately he invited himself to Monkey’s rheumatology appointment this past Thursday.

We’ve been visiting our rheum for two years now. On average we go every 3 months. Every once in a while it’s more often depending on how things are going. Monkey knows the routine. He loves his doctors. He especially loves racing Dr. Kietz at the end of his appointments. But, for some reason a switch went off on Thursday.

When our beeper went off letting us know they were ready Monkey was not interested. “Baby, it’s time to go…your doctors are ready for us now.” At that point I got the look..uh oh…then came, “I don’t WANT to go…I want to go HOME!” Next thing we knew he was off running. Oh boy. Now we where those parents with the loud, defiant child who was running through waiting room away from us crying and shouting, “Nooooooo! Nooooo! Leave me alone! I don’t want to go!” When Ed and I finally herded him between us it escalated. He dropped to the floor and played ragdoll. *sigh* Ed picked him up and then the screaming and kicking started. Big tears screaming down his face all the while. You would think that we were taking him to get tortured.

I wish I could say that once we were settled into our room that things got better but they didn’t. I had to stand guard against the door so he wouldn’t bolt out while he yelled at me to move and kept hitting and kicking at me to get me to move. Thankfully hubs stepped in and scooped him up (which of course he didn’t like) but hitting and kicking is not ok no matter how upset you are at Momma and Daddy. So, he retreated to hiding under a chair where the sobbing continued.

I’ll be honest with you here. At this point I was a mess. It broke my momma heart to see him like this. I wish I was one of those stoic moms who can bottle up emotion until everyone else is out of sight but I’m not. The tears were flowing freely down my cheeks through it all. I was a momma full of mixed emotions. I was embarrassed, I was sad, I was frustrated, I was confused, I was angry. Thankfully I went into the appointment knowing that I wanted us to talk about a change in meds. I wanted him off MTX if possible and switched to Enbrel. I never in a million years would have thought I’d be wanting Enbrel. When we started on this JA journey I was scared of MTX but I was terrified of biologics. Oh how things change. So through the sobs and screams and tears (mine too) the doctors suggested Enbrel before I even mentioned it. They read my mind. We gathered him up, skipped the blood work (we’ll go back another time) and headed home. More honesty…I cried almost the whole way home.

So here we are, about to start another leg of our journey with something new. We had to get Monkey tested for TB on Saturday (standard procedure with Enbrel). (Not fun for the poor kid.) and once we get the results back from that we can move forward and make appointments to start his Enbrel injections. Yup, we’re back to injections. Nope, he’s NOT going to be happy about this at all.
BUT…even though I had my mini meltdown on Thursday (along with him) I’m here to share that there is still good that has come from his JA. Yes, I HATE that he has it. I hate that he is ‘different’ and won’t have a ‘normal’ childhood. I hate that he’s going to have to get used to getting a shot every week that burns. I hate that doing that will be his new normal. I mean, he’s FOUR! What I don’t hate are all the people I’ve met because of JA. Other parents who are struggling with the same emotions and feelings. Parents who’ve been down the road I’m just starting on. Moms who can tell me how they dealt with these feelings and how they continue to deal with them. Moms like Kim Miller, author of Living With Juvenile Arthritis. Kim and I ‘met’ on Facebook in one of the JA support groups. We connected pretty quickly and I’m so thankful to call her one of my closest friends. I know it’s strange to call some one you’ve never met one of your closest friends but hey, it’s the truth. Guess what though…that all changed yesterday when I finally got to meet her!

KimPrimantis3.22.14

Even though Kim and her boys reside in Illinois they are making their way to D.C. for the Summit. (You can see her post about that here.) Luckily for me she decided to drive right through Pittsburgh! Woot! So yesterday I had the amazing pleasure of meeting my sweet friend for the first time! We decided to meet at Primanti Bros. (a Pittsburgh must!) for dinner then spent the evening chit chatting away. It was SO awesome to finally sit and talk to her. We’ve spent lots of time talking via FB chat, I mean, she’s one friend that I ‘talk’ to multiple times a week. To be able to actually sit across from her and talk…what a blessing. It came at the perfect time too. She was able to talk to me about their experiences with Enbrel and she eased my mind and nerves quite a bit. We shared our frustrations and concerns but also talked about how proud we were our our brave boys. (Both of her boys have JA.) Just knowing that she’s been down this path ahead of me is comforting. Seeing her boys happy and smiling was a wonderful encouragement too.

This week has been one crazy ride with lots of downs but some ups as well. I’m so very thankful for those ups and those are what I’m going to focus on. I’m so thankful for a husband who’s by my side through all of this letting me cry when I need to and friends who truly understand what we are going through. We’ll get through this…will it be easy, no, but we’ll be stronger on the other side.

Tuesday, March 18, 2014

The Good, The Bad and The Ugly of Methotrexate

Today I write a little bit out of frustration and desperation. I want to throw my hands up, wave a white flag and beg some one to come take this JA thing away. You're probably asking why....I mean, it seems like Monkey is doing great, right? He doesn't seem to be in pain, he's walking, running, and acting like a four year old should act. What's the problem? Let me tell you.

It's the other side of the coin...the trade off we've had to make to get where we are with his disease. He's been on Methotrexate for a little over a year now. As with most medications there are possible side effects...here's a list of common MTX side effects:
Bacterial Infection of Blood or Tissues affecting the Whole Body, Infection caused by Bacteria, Inflammation of the Gums and Mouth, Canker Sore, Stomach or Intestinal Ulcer, Inflammation of the Lining of the Stomach and Intestines, Hole in the Intestine, Bleeding of the Stomach or Intestines, Sun-Sensitive Skin, Azotemia, Decreased Blood Platelets, Decreased White Blood Cells, Dizzy, Low Energy, Loss of Appetite, Feel Like Throwing Up, Throwing Up, Not Feeling Well.
When Monkey first started MTX he showed side effects…I’m talking days after his first dose it was that fast. He began to get what looked like chapped lips and eventually that turned into sores in his mouth. He also complained of an upset belly. The docs quickly called in a script for folic acid and leucovorin to counter the effects. Thankfully that did the trick. But, there are a few undocumented side effects. Ones that other families have experienced but that are not officially listed. A few months later we experienced one of these…the MTX Monster started showing up.

Most four year olds can be temperamental, I know that. Especially when they are strong willed and when they have two older brothers, one of which is only 18 months older than him. But the way he’s been acting lately…I mean, it’s like a crazy drama train goes off in his poor body and he doesn’t know what to do. He’s always on the edge of tears…always. He flips out so easily if he feels like some one isn’t being nice or fair. And when I say flips out the poor kid runs off sobbing like his dog just got hit by a car. I try so hard to talk to him and comfort him. I try to let him know that it’s ok that he’s feeling frustrated/sad/angry/hurt but that we need to find a better way to react. That usually doesn’t go over so well.

It just breaks my heart when he’s like this…which is more often these days. I know it’s not my Monkey. I know that he is like that somewhat but not to this degree. It’s like the medication has turned up the volume on his emotions. I also know that it probably makes him tired and probably makes him not feel well. That would make me moody too. The hardest part is him not being able to express how he feels or why he’s acting the way he is. He can’t look at us and say, “I’m not feeling so great today, I think I’m going to lay down and see if I feel better after.”

So, here we are with the good, the bad and the ugly of JA and medication. Thankfully we have an appointment this week with his doctors so we can discuss our options. Please say a prayer for us that we make the best decision for him. It’s so hard to figure out what’s best when all the options have their bad points.

Sunday, March 16, 2014

I’m 30 and I have Arthritis–Guest Post from A Boy, A Girl and the Marine Corps

Today I’m sharing a guest post from a new blog friend of mine. I’ve followed A Boy, A Girl and the Marine Corps for a long while and I always enjoy her snarky posts and honesty. When I learned of her recent diagnosis with a rare form of arthritis I asked if she would share a bit of her story on my blog. I hope that her honest post will help you see that RA, JA, heck any form of autoimmune arthritis is VERY serious. It hurts…often all.the.time.

AgirlAboy&Marines

I’m 30, I Have Arthritis, and sometimes that is really hard to deal with.

I’ve always been an athletic active person. I played tons of sports growing up, I ran the Tough Mudder, I generally can’t sit still, which adds up to me being an active person. I have had a lot of weird and unexplained health issues in my life. Who knows how many of them are related to my autoimmune arthritis? Could be all or none.

But a year ago, I was seen multiple times over three or four months for extreme exhaustion. This is not something I had ever coped with. I don’t nap. I’m just not a napper. But for some reason, I was constantly falling asleep. I was sent to a specialist and told it was possibly narcolepsy. FREAKING NARCOPLEPSY. I laughed at the absurdity of it all and thought, “Only me.” But before I could get my sleep study done, I was faced with a new and worse challenge.

Just a few months after being told I probably had narcolepsy, I was hospitalized, covered in lesions and hives, joints filled with fluid, pain like I’d never known (which is saying something from a girl who has broken nearly every bone possible and had just had wrist surgery), and facing an unknown adversary. It became apparent that it was quite likely that the extreme and chronic fatigue was actually the first symptom of an autoimmune disorder waiting in the shadows for a moment to pounce.

In January of this year, it was decided I had what is known as Seronegative Arthritis. An uncommon form of arthritis not usually seen in 30 year old women. While Rheumatoid Arthritis is commonly seen in women and often younger women, Seronegative Arthritis is commonly in men, and is not usually bilateral. Me? Of course, I have it in both ankles, knees, wrists and hands. It is asymmetrical, affecting my left leg more than right and right hand more than left, but that is about the only thing even a little bit close to textbook that I exhibit (and it’s not that close).

And you know what? It sucks. That’s just the beans of it folks. I’m 30, I’ve been house bound since November of last year, I’m lonely, I’m painful, I’m gaining weight from the medications and inactivity, and life is hard every day.

Each morning I wake up and I don’t know until I move if today is a good day or bad. Sometimes it’s both. Sometimes it starts out one way and ends another. Sometimes it’s a string of bad days 10 days long. Sometimes I tense at the idea of just getting out of bed. Sometimes, I cry because I need to shower, but the idea of trying to sit down on my stool is so horrible that I can’t.

I am a pretty optimistic person. I generally try to look on the bright side of life. But one thing I have noticed is how few people understand my daily life. Yes, I joke about being a hermit and how my situation has indulged that. Yeah, I think it’s funny to say that I got what I wanted and hate people anyway. But the reality is so much more than a silver lining look at life.

The truth is I am ALWAYS in pain. Just some days are less painful than others. I have a daily debate on what I need to do and what I can put off. Showering every day is out of the question. Some days, going to the bathroom is about as active as I can get because even that simple act is excruciatingly painful. Have you ever thought about how much pressure you have to put on your knees and ankles to sit on a toilet, let alone stand back up? Some days, it’s all I can do to roll over in bed. Most days, I have to pick a position to sleep in and stick with it no matter what.

I can’t put socks on regularly yet. So I wear the same ones for a few days. Gross? Maybe, but I can’t always bend enough to reach my feet. This isn’t glamorous. This isn’t me lounging in bed in comfy pajamas, snacking on cakes and cookies and watching trash TV and loving it.

This is my life and it’s a daily struggle to do normal things. I can’t go up and down stairs. I can barely dress myself. I couldn’t blow dry my hair even if I felt confident enough to go out in public otherwise. I have a hard time putting on pants, let alone socks. I have days that I can’t even sit upright in bed because of the pain.

I’m only thirty years old. I have autoimmune arthritis. I take medications that make me sick to my stomach, but make the pain more bearable so it’s a trade off. I can hardly care for myself. And it sucks. And sometimes, it’s hard to deal with.

A Girl is a self proclaimed semi-professional blogger who began blogging in 2008 as a means of coping with a deployment. She is married to an 11 year veteran of the USMC Reserves, whom she met shortly after he returned from a deployment. She was recently diagnoses with a rare form of arthritis after waking up suddenly unable to walk. Her blog is a snarky collection of her thoughts on life as a military spouse, life as a young person with arthritis, and life in general. 









Wednesday, March 5, 2014

2014 Juvenile Arthritis Conference-Unite for a Cure & 30th Anniversary Celebration!

When I finally got plugged into the Juvenile Arthritis community and the Arthritis foundation it was just a few weeks before the Juvenile Arthritis Conference in 2012. I was so curious as to what the conference was so of course I did a little research. The Juvenile Arthritis Conference is the Arthritis Foundation’s signature, nationwide event for families affected by Juvenile Arthritis. It’s a chance for families affected by this awful disease to join together, offer each other support and encouragement and also to learn more about different ways to manage their child’s arthritis. It’s also an amazing chance for these JA warriors to meet other kids just like them. Kids that struggle with the same struggles they do on a daily basis. A chance for the JA kids to feel ‘normal’ for a change.

During the 2012 Conference I sat at my computer and read so many posts from parents sharing how excited they were for the conference. I read posts while they were at the conference of how wonderful it was and how they were learning so much. I remember hoping that the next conference would be closer to home so we could also attend. Unfortunately, the conference in 2013 was held in Anaheim, CA. Couldn’t have been any further away from us here in PA. To say I was a little bummed would be an enormous understatement. This year the conference will be held in Keystone, Colorado. Not quite as far but still far enough away to make it a challenge for us to go. I am determined this  year though. I feel in my heart so strongly that I need to be there. Not just a want but a deep feeling that I actually need to be there.

JA Conference 2014

One of the reasons that I blog about Juvenile Arthritis is to raise awareness. One of the bigger reasons I blog about JA is to share our personal experiences openly and honestly with other families who are new to the JA community. When you first get your child’s diagnosis you can find yourself confused and overwhelmed. Heck, I spent months in that state before I sought out the Arthritis Foundation and groups on FB dedicated to JA Families. I want to be there in those early stages for families to help them as they navigate the first few months of diagnosis. Help them through the fears and worries. Help them make sense of all the information that is suddenly thrust upon them. Help them know that while this is a big change in their life that there is HOPE and that they can find peace. I want to be a light to these families.

I know that if we are able to attend the conference this year I will be not only exposed to so many new families experiences but I will also have the chance to learn even more about this disease and in turn share my new knowledge with you, my readers. I will have the opportunity to be there for so many who cannot and relay the important information to them through my posts. It will also give my boys a chance to see the challenges that their brother may face in the future and help them be sensitive and understanding when he faces these new things.

While some local branches of the Arthritis Foundation do offer scholarships to families to help them get to the conference we will still need more funds to get us there. This year I decided that in addition to fundraising for our local walk team that we will also fundraise to help us reach our goal of attending this year’s conference. I would like to have at least one local event and I have some ideas for some online fundraisers. I have also set up a gofundme account so that anyone who feels compelled to donate can do so easily online.

I know to some this may seem like a selfish thing for us to do but the more we as a family learn about this disease the more we can help Monkey as he grows. He will ALWAYS have Juvenile Arthritis. Yes, he may go into remission but he will always have a chance to relapse. There is no cure for this…none. By learning more and being a more educated and knowledgeable advocate I can help in some small way to better his future. I can help make others more aware so that somewhere down the line there maybe be even more HOPE for him and other kiddos just like him.

Tuesday, March 4, 2014

Tips to get fit with Maryum!

Right now I’m horrible at working out and eating right. I’m not ashamed to admit it...it's just the way things are right now. I WISH I was better. I know I’d feel better all around if I took better care of myself but I have a hard time motivating myself. (How do you like that for honesty?) I do want to change that though. A couple years ago I was doing really good…working out every day and eating fairly healthy. I even did a couple of 5ks! I know I can get back there and hopefully this little bit of motivation from my good friend Maryum will help!

Maryum Family
Maryum is a southern momma of two that ROCKS the workout world. Not only has she transformed herself into a fit and healthy woman but she has also become a personal trainer who now helps others every day turn their health life around. She started Superior Body Training around this time last year and her business is just booming. I love seeing her posts on her Facebook page about her clients as she shares their progress pictures. Such an inspiration! So, I decided to ask her a few questions and see if she’d share some tips for us moms.

As a mother how did you find the time and motivation to work out like you do?
I have to plan it out like I would any other important appointment in my day. If it’s important to you, you make it happen right? So just like a job or doctor’s appointment if it’s on your schedule you make no excuses to get to it. That’s how I do it and have for quite some time now. Of course, there are always going to be little hammers that get thrown into the mix: like a sick child or mother nature causes some crazy storm (like the one here in Atlanta) that get in the way of your workout. But those are the same things that get in the way of an important appointment or job as well, so that should REALLY be your only excuse to not make it happen.

What advice would you give to other moms who feel like their life is already too hectic?
If you want it bad enough you just got to plan it into your day. Life is hectic but that’s not going to change, how do you find the time to make it to an appointment or get breakfast, lunch, and dinner cooked, you just DO, right? If you set an alarm or something that says at 2pm I am going to work out then when that alarm goes off, make no excuses and get it done. If the kids are fussing make them part of the workout, if you have little ones you can even use them as a weight. Strap them on and do squats or lunges. Do shoulder presses by lifting them up and bringing them down, or pop a short movie on for them while you work out.

Why are you so passionate about being fit and eating healthy?
Gosh, this one I could go on and on forever about. The most important reason I am passionate about being fit and healthy is simply My Children! I want to set a good example for them, I want them to see that this IS part of a normal lifestyle, that sitting in front of the couch watching tv, eating fast food drive through and junk food is NOT normal and should never be considered normal. Healthy should be normal, being active should be NORMAL. I don’t just want to be fit and healthy so I am around for my children long into the future but I also want them to grow up as fit and healthy individuals. I sometimes have to bring my children to work with me when they are out of school for vacation days and when they do they beg to work out too. They love it! When I have them with me I try to put together a fun little circuit for them to do when I get done training my clients so it makes it worth sitting there watching me train clients for a couple hours.

What are your suggestions to make the transition to healthy/clean eating smooth?
Take baby steps, don’t try to change it all in one swoop. Throwing out everything in your pantry and trying to start all over can be incredibly overwhelming. Change things out a little at a time, maybe swap out your margarine use for coconut oil or real butter first, switch from packaged snacks and processed foods to less refined options like fruit, veggies, cheese, nuts, dried fruits, etc. If you choose to eat grains swap out for a more natural option. So instead of white bleached flour maybe switch to whole wheat flour, rice flour, coconut flour, or another natural source. If you like Rice switch to brown rice instead of the microwaved rice (I know how tempting those 90 second Uncle Ben’s packets can be..hey they are fast quick and taste so yummy but loaded with all kinds of chemicals to extend the shelf life and make it cook quickly). I purchased a rice cooker at Costco for $25, this thing has been worth its weight in gold and has paid for itself 100 times already! I turn it on, put it my rice, water and hit go...leave, come home and it’s done!

How do you include your children/family in your healthy lifestyle?
I make sure my kids stay active by involving them in sports, going on family hikes, bike rides, playing outdoors, etc. Sometimes they even get to join me at work and get to do a little mini-boot camp, when I get done with my clients.

As for the nutrition side of things; well they love to go to the farmer’s market when it’s open in the summer and fall and the rest of the year we belong to a farmer’s market coop and every week the basket is a mystery, they get excited to see what’s in it each week. We try to talk about what snacks are healthy, which are not, which are okay in moderation, etc. We try to keep a healthy balance of healthy treats but they get to indulge sometimes too just like I do. ;)

If a mom is looking to lose weight, what are the first things you recommend? What things are key?
Make sure you are EATING. So many women, moms in particular, skip meals or drastically cut calories to lose weight. This is actually setting you up for a disaster, you will lose weight initially but doing it in a way that sabotages your metabolism just means you will gain the weight back later and probably more than you lost. Your best bet is to eat healthy nutritious meals, consult a nutritionist if you are really lost on what to eat. Secondly, get active! It doesn’t have to be any one particular exercise, if you aren’t working out at all just get moving. Get off the couch or the floor and do something. It could start out as something as simple as setting a challenge for yourself to do 20 jumping jacks every morning. Once you do that for a week move it up to 20 jumping jacks and 20 squats and just keep on adding. Pick something you enjoy, if you hate running don’t say “I am going to start running to lose weight”, if you hate it you’ll quit pretty quickly. If you love riding your bike, do that. Strength training is important for women as well, once you get into a routine of being active I strongly suggest adding strength training to your exercise routine. It is helps add bone density, decreases your risk of stroke and heart disease, builds your immune system, and can also help stave off depression!

Many people adjust their diets by eating less and doing cardio to loose weight but often don't see a change in their body or weight. What are some possible reasons for this?
This is quite simple actually..you are starving your body. Your body starts to go into “survival” mode and holds onto all fat in your body. Eating less, coupled with the added cardio just further signals to your body that you are going to starve it. I suggest making sure you are getting the vital nutrients your body needs, each person’s needs vary based on height, weight, age, gender, etc. Cardio CAN be very beneficial, however, it’s important to build your endurance up first. If your heart rate is constantly at its max, or close to it, you are just burning hard earned muscle and not fat, interval training is a great way to burn fat, build endurance and get it all over with in a shorter period of time. I like putting together my own little interval circuits but there are lots of great videos out there as well. Weight training is also a great way to build muscle and burn fat, you can start out at home with some light dumbbells and gradually build up to heavier weights. It’s important that you lift weight that is challenging for you, if it’s too light and you’re doing 12, 15, 20 repetitions and could keep on going, then you need to increase the weight.

Maryum has also put together this at home workout for me to share with you for those of us who don’t have access to a gym! Thank you so much, Maryum, for taking the time to answer my questions and share this workout with me and my readers! You are such an inspiration!

Full Body Workout Routine that can be done in the comfort of your home:
 
Start with 8-12 reps, do each exercise once through and then repeat the entire round. Aim for at least 2 full rounds to start with and then work your way up to 3. Once you are completing 3 rounds of 8-12 reps without too much problem then increase your weights.
Equipment needed – Set of Dumbbells and a mat if desired, hand towels or dish towels
Optional Equip: Stability Ball


Plank Arm Reach (alternating arms)                                             Plank Leg Raise (alternating legs)
 

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Squat to Overhead Dumbbell Press/Dumbbell Thruster 
clip_image006-Feet shoulder width apart and be sure to sit back with your butt leading the way, your knees should not move forward, keep the dumbbells at shoulder height, with palms facing in toward your face
-As you come back up from the squat thrust your hips forward and arms up into a press simultaneously
 



clip_image008  Bent-Over Dumbbell Row
 -Bend at the hips, knees have a slight bend in them as you pull the dumbbells back lead with your elbows directly back and squeeze your back then release to starting position. Always keep your chest out and butt out so the back stays flat. Try not to let your elbows wing outward.
 





Walking Lunge/Squat Combo
-Instead of a static lunge (returning your forward foot back to the original position), you can do a walking lunge, with a squat in between each step. So, you lunge forward with the right foot and then take the left foot up to meet the right foot, and do a front squat(remember leading with your butt and not moving your knees forward over your toes). Repeat the sequence on the left side lunging with the left foot forward, etc. Just think of it as a walking lunge exercise with a squat between each step

Pushups
Variations: Knees, On Knees but toes off the floor, regular military style push-up (toes and hands on floor)

Floor hamstring Curl
-Lying on the floor on your back, bend the knees and put a towel under your feet and lift your butt off the floor. Slowly slide your feet out until your legs are straight, then gradually pull them back to a bend position..do not let your butt drop back to the floor until all reps are completed.
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Want more of a challenge and have a stability ball? You can also do this with a stability ball
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