Keeing The Fear At Bay

Aside from prepping for a conference, I am prepping for my upcoming appointment with my Rhuemy. I am preparing a list of my symptoms and all my medications. I have pulled out my health binder, which has all the pertinent medical information and copies of all my various scans and tests. This comes with me to every doctor’s appointment. I actually want to ask them for a copy of my most recent bloodwork (although they will take at least 13 vials that day before I leave) and a copy of my positive Anti-nDNA test as this test is highly specific for lupus and those who test positive have a 60-80% chance of having lupus.

Lupus isn’t fun. I am fortunate that I don’t get the facial rash but I do get a rash very easily from the sun. I burn through my clothes so being outside when the UV is high is never a good idea for me. I slather on my SPF 60 if I am going to be outside for any length of time, especially if I am going in the pool. I wear a pair of knee length exercise pants and a swim top instead of a bathing suit as the pants cover the scars on my knees and the swim top keeps my shoulders covered. They burn quickly. I used to get bad blisters on them when I was a kid from sunburns. 

Appointments with my Rhuemy are always good. I never have to wait long and they don’t rush me through the appointment. They listen to me when I talk. Of course, I dress up for appointments and always make sure to have a decent book with me (to read on the subway) to show I am intelligent. I like to take The Decameron by Boccaccio. Doctors treat you better if you are dressed better. It is stupid I know but that’s the way it is. If you are dressed up, doctors assume you are educated and the speak to you in an entirely different manner than if you rolled in with your trackies and a Cookie Monster shirt on. They listen more and give more credence to what you say. 

My husband is going to join the appointment over speakerphone from the office. He wants to convince my doctors to try a biologic on me. They will say they want me to take methotrexate, which is a chemotherapy drug. I will say no. I refuse to take that drug and I have the right to say no. There isn’t a biologic specifically for lupus right now but there are a number of biologics out there like Humira which might help. A biologic drug is produced from living organisms or contain components of living organisms. Biologics include recombinant proteins, tissues, genes, allergens, cells, blood components, blood and vaccines. They are used to treat numerous health conditions.

I am not in a full flare but I can never quite seem to get the symptoms under control. Today isn’t a great day and was neither was yesterday and it had nothing to do with Liverpool drawing against West Ham. I have a lot of pain my feet and left leg. It is affecting my ability to walk. I can’t walk normally because it hurts my big toes very much. It’s frustrating. I didn’t think my body would attack itself at random, wreaking havoc and mayhem along the way.

I would like to get the symptoms I am currently dealing with under control. I am tired of the joint pain. I can’t get my engagement ring over my knuckle now as it has enlarged due to arthritis. I have to see about getting it enlarged. I am tired of being tired. This fatigue has got to go. I am tired of feeling like I have the flu all the time, and I mean all the time. I want to feel normal again. I am still bobbing about in the ocean of life, trying to figure out what my new normal is. With lupus, it’s really hard to define a normal or I find it hard at least. Every day is different yet similar in some way. I wish someone would throw me a life preserver before I drown. Some days I just feel so overwhelmed by my illness and other days I feel like I have conquered it for good, for a few minutes a day at least. Lupus has robbed me of a normal life.

It makes me mad but also sad. I don’t want my son affected by my illness but he is. I missed his his first steps for god’s sake because I was in the operating room getting my knee replaced. He was 8 months old and basically skipped crawling. He hated tummy time and preferred to lie on his stomach on my chest and look up at me. I wasn’t going to turn down the snuggles. He is such a sweet boy but both his parents have chronic illnesses that rob him too.

He is robbed of time with me when I am in hospital or recovering from surgery. He misses out on time with his Dad when his Dad is so sick, he can’t get out of bed. He deserves better than that. It breaks my heart and I worry so much about how it will affect him. I worry about him getting sick. Although lupus does occur in men, 8 out of 10 people with lupus are women so the odds are in our favour. However, it’s a crap shoot when it comes to the Crohn’s disease. We just have to wait and see but every time my son says his tummy is ‘sick’ my stomach drops and a bolt of fear shoots through me. I am terrified he will be sick too. He deserves to be a healthy, happy kid. That’s what I want for him and it’s my job to give it to him.

It’s hard being a parent with a chronic illness, especially one that causes fatigue. Fatigue is hard enough to deal with on its own. Try adding a rambunctious four-year-old to the mix and it’s even more exhausting. You know your child can tell when you are sick. You hate them seeing you in pain after a horrible surgery. You just want to hug them and have them sit in your lap but you can’t do that if you are recovering from hip replacement surgery. We won’t be able to do our morning cuddles or our cuddles, cartoons and coffee weekends. We can still watch cartoons but I will have to sit by myself in the chair or lie on the couch with my son in the chair. We can always curl up in Mummy and Daddy’s bed and watch something together but he has to be very careful around Mummy.

I know there is nothing I can do. His life will be affected by our illnesses. We can’t stop it. All we can do is prepare to deal with the aftermath and work hard to ensure our son isn’t scared or afraid. I want him to feel free to ask questions and be given honest answers. We do what we can to minimize the effect on our son but he is a smart little boy and realizes very fast when Mummy or Daddy are sick. He makes sure to give us extra hugs and kisses to make us better faster. I told him his kisses and hugs were magical, that they could make anyone feel better no matter what had happened.

I always wanted kids and when I was diagnosed with lupus, I figured that door had closed. I was surprised to find myself pregnant only a few short months later. It was a high-risk pregnancy but I was seen almost weekly at one of the best high-risk pregnancy clinics in the world and I have a regular OBGYN. The pregnancy went beautifully and my son was born healthy and big for a child born of a Mum with lupus. He weighed 9 pounds but then peed and weighed a little under 9 pounds. He was whisked off to the NICU with my husband and I got the watch the end of the Champions League final. Not only was my son born on May 24th (affectionately known as May 2-4 in Canada, where you can buy beer in a case of 24) which is a holiday in Canada but his birthday weekend usually falls on the same weekend as the Champions League final.

My son loves playing soccer and watching the Liverpool games with us. I just got a jersey I ordered for him and we are deciding when to give it to him. Do we want to give it to him for the game where Liverpool clinch the title (god willing) or wait until his birthday? It’s a proper, official jersey that I got on sale at . www.worldsoccershop.com . I got it on sale for about half what I would pay in store. I check their site periodically for sales and pounced when they had a white jersey with some blue stripes on them. Blue is his favourite colour. I always wear my jersey on game day and he likes to wear his too but his current Liverpool jersey is for a 2 year old.

Watching the game is just one of the things we do as a family. As parents with chronic illnesses that rob us of time with our son, we are big on family time. All phones go into the Tardis lunchbox at meal times and we listen to music. After dinner, there is no tv, just more music. My son likes to dance which helps tire him out before bed and reduces the stimulation from TV or electronic gadgets. When he is older, I want to do our own history of music and spend Sunday night listening to one particular artist’s music while telling my son about that person. I plan once a month Sunday dinners. 

Meal time is family time and my son’s bedtime is just for him. I have plans to read him the Harry Potter books and the Chronicles of Narnia to name just a few but he needs to be a bit older. He does love books and is excited to be learning to read and write. He can even count to 100 now, a skill he is happy to show off to anyone who wants to stand around long enough for him to reach 100. He is a happy, well adjusted boy who knows he is loved. That helps. It’s up to his Dad and me to make things as normal as possible, to make things seem less scary than they could. It’s our job to ensure he has as normal a life a possible.

I didn’t choose to have a chronic illness but I did choose to be a parent. I always wanted children and my son is the brightest galaxy in my universe. My son didn’t choose his parents. While he is going to be affected by our health, we can work together to make sure that happens as little as possible. We need to strike a balance between honesty and protection. The fear that your child will inherit your illness never leaves you. You do all that you can, even if it isn’t enough and keep going. Being a parent is scary enough but being a parent with a chronic illness is downright frightening. All parents worry about screwing up their children. Now imagine that worry coupled with the possibility that you may have passed on a horrible chronic condition that is going to cause them to suffer.

All you can do is parent to the best of your abilities. Chronic illness is unpleasant. It is messy and painful. It gets in the way at the worst of times and takes a hell of a lot more than it gives.  Parents with a chronic illness just want to hold their children tight and not let go. The thought of them suffering as you do is crippling. You learn to deal with your own illness but are faced with the possibility of your child being ill too. It’s a fear you have to face and remind yourself it’s genetics, not you. Chronic illness robs those who suffer from it of much. It robs their family and friends. Parents with a chronic illness would do anything to see their children happy and healthy. It’s not too much to ask but we need to be prepared to fight, one way or the other.