Dealing with (physical) pain around the holidays

I love gathering with family (obvs) during the holidays. My body on the other hand, does not. I get so thrown out of whack when I can’t rest in the afternoon. Also, if I’m up and out early (black friday, which I LOVE). So this year I decided to really think about ways to help my body deal with the holidays.

First, I have a pretty big family and so does my husband. That means lots of presents to buy (which I love to do, and have loved since a child). Thinking of ideas for special presents for everyone in a month time frame can be so stressful and tiring. Between thinking, shopping, carrying inside, and then wrapping my body starts hurting just thinking of it lol. This year I started shopping in September. I’m mostly done shopping already which everyone is mad about because they haven’t even started. It really worked out well though. I only have to hit a few stores on black Friday, and I’ll be completely done. Usually shopping is the worst thing for my body and takes days to recover from. This year I, hopefully, won’t have the same reaction.

Body pain. Standing too long, sitting too long, being uncomfortable. I have learned to tell people how bad I’m hurting and that I need to lay down for a little. Honestly, people don’t mind. I thought before about all the time I would miss if I laid down, that people would be mad, also that I was embarrassed. But I have learned that I need that break, and it makes the rest of the night more bearable.

I love to cook and bake, as does my family. We cook and bake for hours during the holiday season. We are insane and make over 20 types of cookies all in one day. This year I decided to take charge and make everyone bake some beforehand, and we will only do 5-6 types together. Now cooking like for Thanksgiving, I started making stuff on Monday. I have either froze or refrigerated it until Thanksgiving. So far my body is tired and hurting from cooking, but not the way it would be if I did it all at once on Thanksgiving.

I have definitely noticed I’m less cranky when I carve time out of my day to rest during this crazy season. I make sure to plan ahead and come up with new ideas to help myself when I know by the end of the day I will hardly be able to walk because my body is in so much pain.

My sleepy kitty having a cat nap with momma

Happy Thanksgiving, and I hope you can enjoy this holiday season using a couple tips that I’ve come up with 🙂

Did something for the first time that I haven’t done in almost 2 years!

I got a massage 🙂

I used to go every month to help deal with the daily pain and stress that was weighing me down related to my mixed connective tissue disease. I had a monthly membership and went to the same masseuse for over 5 years. And then I got Covid.

Honestly, my pain did increase and it was hard not getting that massage every month. I did it for so long that just stopping so abruptly kinda messed me up. Some days the pain was so intense it was hard to sleep because every time I rolled over the pain would wake me up.

Now how does Covid fit into all of this? Covid gave me asthma – I just found out what it was 2 months ago, so for almost a year and a half I had trouble breathing basically if I did something too fast. It really put a dent into my self confidence in the sense of I always had to plan what I was doing – not be spontaneous like I usually was. I always had to think of my lungs and if I could handle the task.

Let’s talk about some of these “tasks”. Walking from the car to the beach, would I run out of air and have to use my rescue inhaler 4 times? Can I lay face down into that circle pillow during a massage and be able to get enough air in? How about can I actually lay on my chest because it hurts so damn bad half the time. Can I walk into the grocery store to get the ingredients I need? Can I see the child I used to nanny or will I scare him if I run out of air? I need to use inhalers and literally shut down in order to be “normal”.

“running out of air”- not getting enough oxygen in to fill my lungs to make me breathe normal. Use my rescue inhaler to help this process along. Still doesn’t help need some more puffs. Walked too fast, which wasn’t fast at all and I need to stop and catch my breath. Don’t even think about talking and walking. Cold air and hot air are horrible. My body automatically yawns when I’m not getting enough oxygen to try to get more. Stay calm. Anxiety doesn’t help. I have never had anxiety before. I need to stay.calm. breathe more. Ouch my lungs and chest HURT from breathing. My life has completely changed. I have changed. I’m scared to do things that I once have done.

So I got a massage for the first time in 2 years, one step back into my new form of my “normal” self.

We (almost) sold our house!

We decided in August that we wanted to sell our house. We had a renter in there, and we came to an agreement about when she was moving out. It ended up being October 23rd, and I put a timeline of 2 weeks to turn it around and put it on the market. Holy shit. Idk what I was thinking.

So from Sunday, October 23rd- Saturday, November 6th we were all hands on deck. We decided to put carpet down, have our entire house painted, and then my husband and I would do the rest. There were things in there that were BLACK that shouldn’t have ever gotten to that color. Barf!! Scrubbing everything for days and omg the body was screaming at me.

As it happens, during the same time period of trying to get our house ready to sell- my husband’s pop pop passed away, and we had to head up to north jersey for a 2 day viewing and funeral. Gutted both of us. We also had my best friend’s wedding, which I was the matron of honor in. So, another 2 days were taken out of our 2 week timeline to get the house done. But guess what- we did it!!

We were at the house for 4-5 hours every night. My body was so tired and hurting from painting, cleaning, scrubbing, more cleaning, vacuuming, cleaning the wood floors. I don’t know how my body was able to hang in there, but it did! By the end I had to have my mom help with some of the scrubbing because even a “normal” person couldn’t handle that much scrubbing lol.

We brought our dogs, which this house was their home for 5 years. They went INSANE they were so excited to be back!! It was so cute. They ran around like puppies and played for hours. (we’ve lived with my parents for the past 2 years and this was their first time back).

Our house has an offer and we’re in the 3 day lull of waiting before we enter into the big contract. I’m sad to see the house go, but I’m excited for the next step. We want to buy about an acre of land near farms and build our own house. But for the meantime, we will be saving as much as possible. And I’ll be resting my body before the chaos of the holidays start.

So happy Saturday, and enjoy your weekend!

Life after Covid- sinus infection

Whew. It’s been a crazy couple of weeks. At the beginning of the month, I came down with some kind of sinus infection/cold and it took me 2 weeks to fight it- and it’s still ongoing!

I had lots of appointments scheduled, eye doc, injection in my tailbone, chiropractor, acupuncture. So. Many. Appointments. Monday morning I woke up and I’m like, ut ohhhh not good. I spent the rest of the day in bed and canceling everything.

Whenever I get sick, it always hits whatever is the weakest. That might be my back, my mctd with joint pain, headache/migraine, what have you. Now, it goes straight to my chest. I was so bad I was running out of breath just turning over in bed. I was coughing up a storm (no fever) and just felt like I couldn’t get enough air in.

Was it Covid? No. I didn’t have any of the symptoms I had with Covid and the vaccine. My lungs are dealing with this asthma diagnosis so I relied heavily on breathing treatments or my (4!) Inhalers.

During this sickness I ordered alllllllll the vitamins to help kick the virus to the curb and hopefully in the future will help boost my immune system so I won’t catch everything that’s going around.

So here’s to not coughing every other minute, getting out of bed, re scheduling and going to all the appointments I missed, and feeling better. Started the week off with this awesome salad! Yum!

Have a great week!

The (painful) days of summer

Summer is my favorite season. I love the freedom and relaxing vibe that summer has. For me, curling up with a book down the shore (new Jersey talk, aka the beach) and laying in the sun. My new norm isn’t liking my favorite activity which usually leaves me feeling down in the dumps.

The sun has new meaning for me now. I will usually lay in the sun maybe once a week if I go to the shore, or chill in my aunt’s pool, but I’ve started to notice how crappy I feel after being in the sun. The sun zaps the energy right out of me super quick now. It also makes my joints flare up with aching pain. At the beginning of the summer I was spending a lot of time in the sun, where now I’m in the sun for a few hours and I’m done.

The other thing that I have noticed, which isn’t unusual is how my body feels when a huge storm is rolling in. I LOVE thunderstorms and the memories that they hold. Spending nights in the garage with my dad and watching the rain fall, counting how many Mississippi’s there were between the lightning and thunder. Once the storm was done, running through the puddles and getting soaked from my feet to my shoulders.

But now storms hold different memories, which is so true for many people who deal with joint pain. Knowing when it’s going to rain without looking at the forecast, changing plans because my body hurts so bad I can hardly walk to the bathroom. Laying in bed wishing the storm would roll through quicker so you can feel better.

Even with all the nasty stuff that comes with the storms and rain, I still love them and I still love summer. I just try to plan around the long, painful days and look forward to the my good days of summer.

I try to remember how blessed I am to have the shore so close, and being able to escape when my body allows. Stupid thunderstorms and rain, but happy mind and body who can’t wait for the storm to pass.

Pescatarian for a month..what!?

For a long time I’ve been thinking about giving up meat. I’ve heard many stories or read stories online about people with different autoimmune disorders giving up meat and it helped some of their symptoms. So I figured why not!? I’ve thought about it for months, why not give it a try?

I decided that after going to my in-laws for 4th of July, that I would begin the process of removing meat from my diet (but still eating seafood and eggs). I planned to do it slow, not eating it 3 nights a week to start and go from there. Instead I gave it all up at once.

I think because I was thinking about it for so long I was ready to just do it. I’m currently a month in and haven’t had any meat, but if I do, I’m not going to beat myself up about it. But for now, I’m currently trying new forms of protein and trying to create new meals for myself with experimenting. So far so good.

So do I notice any changes yet? Joint pain, no. Stomach issues? Yes!! I’ve always had a really sensitive stomach, and I would run to the bathroom many nights a week after eating dinner. Now, my stomach is more settled and enjoys what I’m eating. This has definitely helped in keeping me on track. I’m more conscious of what I’m putting in my mouth at all times. Thinking about having a balanced meal and getting enough nutrients is something I’ve never thought so much about.

Hopefully month 2 brings about more positive changes!

New rheumy appointment tomorrow!

I’ve been very happy with my rheumy for years. She gave me as much info as she could, explained things in “regular” terms, and has always shown a listening ear whenever I was dealing with too much. But over the last couple years, as she becomes busier, and I show more and more symptoms, I’m just not happy with her anymore (this took me a long time to figure out).

I’ve been with this doc for 8 years. Last appointment she told me if my new medicine doesn’t work, she doesn’t know what to do for me. I’m a very A type person, and I NEED a plan. When she told me this, I realized getting a second opinion was a good one.

So here I am today, writing down new symptoms and questions I want to ask my new rheumy. I’m feeling hopeful. Which is kinda scary because I’ve been let down time and time again by doctors, which I have learned is the norm within autoimmune community.

Here’s hoping that I will have a new plan in place tomorrow. I need plans. My mind needs plans. I need to make sure that I’m doing the best that I can to help my body in the best way possible.

Fingers crossed for new plans tomorrow! 🤞

Looking for something to do….

I’m one of the lucky ones that has qualified for permanent disability. For the past year and a half everyday has been filled with doctors. I’m currently in a lull, and finding myself bored most days.

I was a teacher, and have wanted to be a teacher for most of my life. When my mid-twenties hit, I realized I could no longer do the job that I had dreamed about forever. After, I decided to become a nanny that way it was fewer children, but I was still able to teach young minds.

Then I got Covid.

I’m still dealing with the after effects. My mind and heart are becoming bored and wanting to teach children again. Everyday I think about it and miss it. And then I remember my reality. I’ve thought about different things that I could do that my body would allow, but then I have a few bad days and remember, again, what my life has become. It’s so frustrating to have this back and forth battle in my mind and body daily.

I tried to start nannying again and in one day I used my rescue inhaler 10 times. My lungs just aren’t what they used to be and it’s hard to keep up with kids. Soul crushing for me.

So here I am just wondering if there’s a job out there for me that would be a perfect fit. But for now, I’ll just do the best I can to stay busy and feel like I’m something/somebody.

Lake day!!

So I used to nanny and stopped when Covid hit. I started when he was 3 months old and ended when he was almost 3. I decided to give up nannying because my body couldn’t keep up anymore and now I have so many doc appointments a week (between 3-5).

I’ve been missing him, and asked dad if I could take him to the lake in their neighborhood. I’m not going to lie, I was really nervous with how my body was going to respond. It’s been super hot, and my lungs have a really hard time when it’s this hot out (95 and counting). The other thing is that kids don’t really care/understand if you are having trouble breathing, or can’t carry them because your back hurts so bad, or that I have a hard time breathing and swimming.

So, day of I’m starting great. My body held up pretty good until it didn’t. Luckily it wasn’t when I was with the child. I had to use my rescue inhaler multiple times, had to take breaks in between swimming and playing, and made sure to breathe and stay calm. I enjoyed the day so so much, and I’m so glad I didn’t let my body hold me back.

When I got home later that night I could hardly walk, had to watch my breathing, and talk in moderation because air flow wasn’t that great, but overall would do it all over again and I plan to later this summer!

So what I learned from this adventure is to have more confidence in my body, and try to trust it more even when I think I can’t do something.

Happy Tuesday, and I hope you find ways to beat the heat this week 🏊

Trial of new medicine

I started a new lupus medication on Tuesday. Even though I’m diagnosed as having mixed connective tissue disease, most of my symptoms are within the realm of lupus. The symptoms I have are: a red rash across my nose and onto my cheeks (butterfly rash), fatigue, pain in joints, headaches, dry eyes, chest pain (started after I had Covid in April 2020), and blue toes and lips from Raynaud’s syndrome.

I have been on sooo many medications over the past 15 years I can’t even keep them straight. The last few were azathioprine, methotrexate, and I just started a new one called benlysta – which is a very new drug. It’s crazy that some meds will work for a period of time and then all of a sudden all of my symptoms start coming back and it’s time to start a new med (which takes 60-90 days to get into your system to see if it will help).

So I just got my auto injector benlysta in the mail the other day so I decided to start then. my body has been a little crazy (code for I feel like complete shit, but hide the shittery well lol) but I woke up Wednesday morning and my joints are all inflamed and hurting. I’m hoping within the next few days my body will start to calm down.

But the biggest reason I wrote this blog about my new med is that my dog, maui, has not left my side. I just think it’s so crazy how in tune he is with me, and can almost feel my pain. He is almost always touching me and trying to make me feel better. Does your pooch or cat do the same?

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