My Life With an Autoimmune Disease and Becoming a Wife and Mama ☆guest post☆

Today, a guest post from my friend who is also my cousin.

My Life With an Autoimmune Disease and Becoming a Wife and Mama

☆guest post☆

I was diagnosed with JRA,(Juvenile Rheumatoid Arthritis), when I was one year old. I have never known life without it. I learned to walk approximately a month before I turned 2. It was a miracle and I am very grateful to God that I'm not in a wheelchair. My parents could tell you more about the early days, months, and years of this than I can. I'll try and give you a little glimpse of how my life has been. 

RA has definitely made my life painful and not always very easy. I haven't been able to do everything my friends were doing such as running fast or playing well at games and sports in school. Some sports I didn't participate in at all. (I went to our private church school for 9 years.) I also have suffered from side effects of medications at times. After I had graduated from grade 9 I was able to do some babysitting. When I was 16 and a half I started working part-time babysitting a darling baby boy. That job became more full time and I was there when another darling baby boy joined the family and I stayed with them till the oldest was 6 and the youngest was 3. Then I headed off an hour from home to teach school in another of our private church schools. I stayed there for 2 school terms, had a few months off and headed off to Edmonton to volunteer for 6 months. Then I came home and taught in another of our church schools closer to home for one school term. When that school term was over I guess I figured that with me having arthritis and all and I was 26.5, I wasn't going to get married, so I accepted this fact. Soon after that acceptance, I received a proposal from my fellow teacher. I said yes. During these different stages of life I suffered from various arthritis flare ups, pain, side effects from meds, etc. During our engagement I changed my arthritis meds because the one I was on was making me feel nauseated and sick a lot of the time. This new med didn't make me feel this way thankfully. We got married and enjoyed young couple life. Of course there are adjustments to a new life. And my health was not the best. I didn't have a lot of energy and I couldn't garden because kneeling is pretty painful for my knees. I know my yard wasn't beautiful and it hurt sometimes to know that and wonder what others were thinking. I compared to other young married women and I didn't do a lot of things that they did. I've had to realize and remind myself many times that people will not always understand and I shouldn't compare either. It hurts sometimes but a person has to get over that. And not only that! I need to remind myself many times not to judge others either. Arthritis is an invisible disease to a certain extent. I don't know what invisible things others are dealing with. I hope and pray I can be understanding. I also want to say that my life wasn't all discouraging and filled with pain. I've had many happy times and blessings too. Now I'll write a little on getting myself to motherhood. 

First of all I asked my rheumatologist what the chances were of me having a child with RA. I don't remember numbers, but he told me that the chance of me having a child with RA is only slightly higher than for someone who doesn't have RA. 

When you are on certain types of meds you can't get pregnant while you are on them. That's how it was for me. This meant going off of my medication, cleansing it from my body and waiting a certain amount of months before trying to get pregnant. During that time my arthritis majorly flared and I could hardly walk. So they put me on a pregnancy-safe med and I didn't get pregnant. Finally I found out that this particular med can mess with your cycles. So I switched meds and it didn't take long after that. My pregnancy was not all easy. Morning sickness, sinus infection, scary arthritis flare, and the pandemic. But I made it to 40 weeks...

MOTHERHOOD 

In summer 2020 our dear little C was born, via emergency c-section. She was born right on my due date. A tiny little thing, but the sweetest little thing. We were in the hospital for a couple of days before we went home. Then my husband was home the rest of the week before going back to work. Because I had c-section I had to have full time help so our families pitched in, especially my mother and my mother in law. Also the church ladies brought meals. About 2 weeks postpartum, I landed up back in the hospital with infection on my incision. Little C and my husband were with me there. Once we were home again I had to have home care come in to do dressing changes. Our moms continued to help us. I feel like the newborn stage was not the most fun for me because of all the extra complications, but I adored our sweet little baby even if it meant getting up a lot at night. Being in a pandemic with unbearable lockdowns, having RA, and having a baby didn't make life very easy. I relied on my mom a lot when my husband was at work. I was depressed at times. BUT there are so many joys in motherhood and I believe that they far outweigh the bad things that happened/happen. Watching a baby develop is so much fun! Learning to eat cereal and baby food from a jar, learning to move around, playing with toys, giggling,  cooing, talking, getting teeth(not all fun), learning to crawl, eating table food, and so much more! Little C is my life. She is now a year old. No, I still don't get everything done. My yard isn't beautiful, I don't always get meals cooked, and our house is often dirty. But my husband is so good about bringing food home or helping cook. (We also have some meals at our parents' places.) My husband helps with other jobs too.

I have to remind myself that the most important thing as a mama is keeping my little one happy. Reading to her, singing to her, feeding her, talking to her. Yes, I have to get laundry and dishes done, but she will play happily a lot of times while I'm busy. Sometimes she likes to come "help" me. I love her so much! She is the joy and happiness in my day. So is my husband! It's fun to make him happy too! When I feel up to it, I enjoy cooking a good meal. 

Some days are easier than others. Some days I feel like I hardly get anything done. Little C maybe had a bad night and so I'm tired and don't get a lot done. Sometimes dishes are stacked up in the sink for a week or more. Sometimes they get done every day. Thankfully I have a dishwasher so a lot of the dishes go in there. 

I feel like I'm jumping around with my thoughts here a little. Another thing about having arthritis and being a mom is that the first how many months of Little C's life she mostly got her baths at my mom's house. I can't kneel on my knees so to kneel on the floor by a bathtub wasn't an option. My mom has a nice big laundry sink where we gave Little C her baths. Now she is big enough she can have baths at home. I had to bathe with her the first while because she was scared of the running water but now she loves baths and I sit on the edge to watch her play and wash her. 

One more thing. I feel so grateful for my husband! In the evenings he generally takes care of Little C while I quickly finish up some work, have a shower, and take a rest in bed reading and just relaxing. I need this so I can keep on being the happy Mama I want to be.

Being a wife and Mama isn't always easy when you have RA. But it is 100% worth it!!!

Pasta Recipe

Unstaged photo of 3-day-old Pasta. This sauce was made with 3ish spoonfuls of tomato sauce and the noodles are gluten-free ones salvaged from some  gourmet Kraft-dinner style packages that super store likes to pawn off on me when I spend a lot of money there. 

Purist Pasta

This recipe is roughly based off one my family has been making for years. The ingredients have been a list in my brain since I was a preteen, and I have been using and adapting it ever since. The current version, the one I’m posting today, is an homage to the fresh garden produce (onions, garlic, herbs, squash, and more) so abundant at this time of year. This is a recipe to take with you as you start wrapping up your summer and edge your way toward fall.

Ingrédients. List I. 

•1-2 newly harvested garlic cloves, peeled and thoroughly smashed (I use a kitchen mallet or knife blade) 

•1 small garden onion diced into tiny pieces (optional) 

•1/2-1 cup butter (No substitutions.) 

•Handful of fresh parsley, basil, or mixture of both, finely chopped 

Directions. Part I. 

In a pot, sauté garlic, and onion in butter over lowish heat for 10-15 minutes or until soft. Stir periodically; do not let the butter or aromatics brown or burn. Add herbs and sauté a minute or two longer. While your veg are sautéing I’d recommend getting that pasta cooking or turning your oven up really high and roasting some wedges of spaghetti squash. If you’re not interested in a meatless meal toss a couple strips of bacon on a hot cast iron pan or whip up a batch of blackened chicken. 

•optional: finely diced sweet pepper, jalapeño, habanero, spinach and/or Swiss chard can be added along with onion and garlic at the beginning of the sautéing stage.  I like these add-ins, but the purist in me loves the original uncomplicated version the most.  

Ingrédients. List II. 

•1/2-1 cup Parmesan (I start with a smaller amount and adjust to taste)
•1 cup of milk or heavy cream. 
•4-6 heaping spoonfuls of sour cream.  If you’re using heavy cream you will need less sour cream.
• salt and pepper 

Directions. Part II. 

1. Add the above ingredients parm, milk/cream, sour cream, s+p to your pot of butter and sautéed veg. 

2. Cook over low/medium heat, stirring frequently until it the sauce is heated through and ingredients are semi-incorporated. It’s hard to get the butter and milk to blend; it doesn’t affect the end result if they’re slightly separated. This sauce can hold up to a 15-20 minute simmer on low low heat if you give it a little stir every once in a while. 

3. Taste your sauce, keeping in mind that once you pour it over the calm canvass of pasta, the flavours won’t be nearly as intense. Adjust ingredients to your liking. Add butter for saltiness, parm for intensity, milk if you don’t have quite enough sauce, sour cream for creaminess. And if you to play up the comfort food aspect , add a dash or two of some kind of tomato sauce (pasta sauce, pizza sauce, sautéed tomatoes, whatever) just enough that your sauce looks pinkish. You’ll know you have the right amount when each bite has a quiet, sweet, tangy, tomatoy undertone. 

4. Pour sauce over cooked pasta of your choice, or serve with roasted spaghetti squash, my favourite way to eat this in fall. 

5. Serving this dish with slivers of crispy bacon and blackened  chicken are great way to erase the vegetarian connotations of this dish, but honestly, if you get the sauce right, you don’t even need the meat. 

6. Finally, garnish with a few sprigs of parsley, and serve.

 

My Life in A Word

I told my mom about our evening. 

Although I hadn’t even included the dramatic details of all the dramatic incidents preluding the dramatic main event, she replied, “That’s dramatic.” 

I told her that word basically fit our whole life. 

She said she couldn’t disagree. 

I frequently wish for less drama. 

Some weeks are more dramatic than others. 

Some days. 

Today isn’t one of them.

 I miss the drama of yesterday.

 Anticlimax is my nemesis.

Hesitant Missionary

You look down on people who don’t do what you do, she said. I love it that there are people in my life who can tell me this stuff. I fully recognized it as truth. I don’t want to be this person. I want each of you to do the things you’re doing, the role you’re called to, without feeling judgement from me. Honestly, I want you to treat me the same way. 

Many days (today, for example) I feel reluctant to participate in the life I’ve been called to, just like the main character in my latest audio book read. Sadly, it’s a novel. I want it to be true. Although reluctant to begin with, Main Character soon has a change of heart and becomes Hesitant Missionary. She gives up her source of income, sells her most expensive possessions, buys a motorcycle 🏍.  Hesitant Missionary devotes her time to driving though the rough parts of town befriending the friendless and then devotes her life and home to supporting women and their children trying to exit drug and prostitution rings. 

Hesitant Missionary made a lot of mistakes. She alienated  friends because they didn’t like the drastic ways she was changing her life to serve others. (Spoiler alert: Like in every good novel, they came around to her way of thinking for a happily ever after ending.) Hesitant Missionary ignored the Holy Spirit sometimes because she thought she had better ideas. She failed some of the people she tried to help but also managed to genuinely help a few. She forgot how to have faith after a woman she was trying to protect dies and a child she was trying to protect is taken into government custody. Hesitant Missionary second guessed herself every other step of the way. These failures sound incredibly true to real life; maybe it’s based on true stories.

Although much less dramatic, there’s so many ways, I recognized myself in this story. I alienate friends and family by my devotion to my kids. I second guess any decision I make. When things go wrong, I forget to have faith. I ignore the Holy Spirit and probably often don’t even notice it enough to ignore it. I disappoint the children and parents I’m supposed to be helping. I sound condescending. My friends helped me realize that it’s a stupid manipulative coping mechanism I use I’m reluctant to do the things I/we feel I/we need to do. I didn’t sign up to be the person I am. Miraculously, I became her anyway, hesitant, but almost willing. Almost willing to do the thing I’m called to do. Always vert willing to project my insecurities on others.

Hesitant Predictions for Tomorrow: 

I’m going to spend the morning trying to get the cooperation of a brother who won’t hear anything I say unless I use the words gloves and swimming.  It’s a foregone conclusion that I will be completely frustrated and energyless and quite possibly resorting to anger by the time I return him to his parents. 

Then I’m going to go to Pelly and spend the rest of the day and evening wondering how to comfort the mom whose teenager OD and nearly died. In all honesty, I’ll be hoping to avoid that conversation altogether, but, like any hesitant missionary, in the end I’ll feel compelled to halfheartedly ask how he’s doing. I’ll inevitably mumble some kind of useless response to her motherly monologue and update on his condition and prognosis. 

At the end of the day I will feel accomplished. I’ll feel happy. I’ll also probably go to sleep wishing I had done something differently. But the Hesitant Missionary taught me something: failure happens. One of my sisters-in-law taught me something else: tomorrow is another day. 

The Ghost of Canada Present

Grief doesn’t always begin as a process that is the result of the death of a Loved One. Sometimes grief begins as a result of a broken heart, and that usually never ends. -Carol Rose GoldenEagle, The Narrows of Fear

One of Brent’s friends recently told Brent a gruesome forgotten story about some local residential schools years ago. It was as horrible and heartbreaking as all the other stories. What made it different to me is that it took place in my community. It makes it personal. Pete is in his 80´s and this story was something  that happened to his father, so it’s safe to guess that it took place almost 100 years ago. The time frame really doesn’t matter. 

The truth really does. I’m not going to go into details here but you can private message me if you want to hear more about this heartbreaking truth. Sometimes my heart feels like it can’t hold more heartbreaking things. Then I start imagining what it must’ve been to be the parents of one of these children who abruptly and silently disappeared from their life forever. Then I decide I don’t know heartbreak.

I spent an hour or two of this Canada Day talking with my husband about our province’s history and its newly discovered mass graves.  That conversation left a haze of melancholy hanging in the stifling air. 

A fist bump from a First Nations stranger who told me I wasn’t racist and that I was pretty cool for a white girl eased my survivor’s guilt a little. The same man told me he and I would each keep loving other people’s children, that that was a way to move forward. 

His words were striking in the face of the renewed grief that Indigenous communities across the country are facing today. This man truly believes that Every child matters. The ones who endured the worst atrocities in the past. The ones who are alive today. Every child matters. 

I know you all have your precious white babies to care for in their perfect little nurseries, but don’t forget to cry tonight over someone else’s babies who weren’t treated as if they were precious and who didn’t have even their most vital needs met. because every child matters.

Gifts, Presents, Cadeaux

Gifts, Ungifts 

I just learned the French word for gift today. Cadeau. plural Cadeaux. This is providential, because it reminded me that yesterday I had written down a list of the gifts I got in the last week. I wrote because I didn’t want to forget any of them. My memory is that bad, not kidding. I tried walking into BP yesterday with one of Brent’s crocs on one foot and one of my flip flops on the other foot. A good memory is not one of my gifts. 

I also had to write these gifts down because it was a difficult week in a lot of ways, and after listing those difficulties, I had to list the gifts for some perspective. I know I should be like modern influencers and share about more of these difficult parts of my life on here, but I can’t for various reasons.  For one thing, My husband doesn’t like it if I write a lot of details about him and about our life online. I have tried to respect that and learn from that and share innocuous things or talk about the parts of my day that don’t involve him much. He’s not the only one who feels that way; one or more other family members are on his side too. I’m not writing this in judgement, because I understand why they feel that way. I’m writing this in the interest of honesty and perspective.

Gifts I got this week

A handmade bracelet from one of my girls. 

The smile on her face every single time she saw it on my wrist all week was amazing. Remembering to tie it on every morning was not so amazing, but that smile helped kick my memory into gear when I was blearily stumbling out the door to go to work at 6:30 every morning. 

The priceless gift of a sour candy from a child. I know it was precious to him; he doesn’t have a lot of candy and he was saving these 3 candies, But his generous soul had to give one to me “because you shared your gum with me yesterday.” I felt a little guilty eating it. I felt so honoured and loved by this selfless gesture. I felt unworthy and unprepared to be a care giver and trusted person to this 10 year old. I felt anxious about breaking the fragile bond we’ve developed. This tiny gift came with huge responsibility. 

A few packages of Bologna from a family who never has much money for extravagant or extra groceries or sometimes even for what I would consider necessary. So often sharing looks the most effortless from people who have the least. (Any one have ideas of ways to make bologna palatable?)

A whole jar of chopped and frozen garlic scapes from one of Pelly’s proficient garlic growers. Their garlic is precious to them and I know they worked hard for this jar of scapes. 

A beautiful pile of fresh brown farm eggs from my auntie. 

C’est L’été

A few words to faithful readers. 

C’est l’été. It’s summer, and the so far it’s the busiest summer of our life. 

We’re working, we’re moving, we’re half building a house. We’re also still trying to meet the demands of our every day commitments and support the people who depend on us. 

As a result, We’re neglecting unimportant things like elaborate cooking and mowing our lawn the minute it looks a little shaggy and blogging. 

If I’m fairly quiet for the next couple months, don’t be surprised  I dream up lengthy pieces in my head, but rarely have the time to get them down in writing. I hope to post more regularly again, but that’s a dream that will wait for a different lifestyle to be fulfilled  

A request 

Because I don’t have time/energy to write and because I feel like I tend to write on the same topics over and over, I’ve been wishing for some different perspectives on this blog.  A few months ago I  tried to get my sister who doesn’t have her own blog to write something for mine, but she has never responded enthusiastically to that  request. I think I also asked my mother, but she didn’t come up with anything either . Although they are unwilling, maybe one of you is willing or inspired to write something to post on my blog or to share something you’ve already written. Private message me or let me know in the comments if you’re inspired. Topic can be self chosen, name can be included or withheld. 

A small announcement to subscribers 

Sometime in July, the email notification system that blogger uses is ending. Supposedly there is an alternative, but I haven’t been successful in figuring it out. Sadly, this is all to say that the email notifications of my blog cluttering up your inbox so irregularly will quit coming in July and will continue to not come until I figure the new system out. 

Au revoir. Have a bel été.