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!
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.
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!
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.
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.
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 🏊
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?
I wanted to jump on the computer and write about something I know so much about- pain! The reason being was yesterday I had an amazing day. My pain levels were only about a 5-6 (10 being the worst) and I was able to push through the little pain that I did have and ended up talking a walk with my dogs, and riding my bike with my husband (granted it’s an electric bike, but I was still able to peddle almost the whole way).
Today when I woke up, I knew right away I would definitely be feeling more pain than yesterday. Before I even moved, I could feel the back throb, knee pain, butt pain, headache and so on. I walked downstairs and saw how cloudy it was, and checked the weather report which showed rain in the area. Weather plays a part in my pain, but some days it’s absolutely beautiful out and I still experience crazy amounts of pain.
With mixed connective tissue disease, and lots of autoimmune diseases, every case is different which makes the disease so frustrating. I experience chronic pain, and have been for over 15 years. My rheumy thinks that I have fibromyalgia mixed in with my MCTD which would explain where some of the pain is coming from in my joints. But she’s not sure. But I love the way that people with fibromyalgia explain their pain—- they start out with so many spoons in a day- say 10, and as they go throughout their day, certain things take away their energy, or spoons, and by the end of the day they are left with 0. Sometimes you wake up and are already out of spoons. It’s crazy how pain works. But this is an easy way for people to understand what you are feeling with how many spoons you have left. I used this analogy for many years to help my family understand what I was feeling.
I once heard my mom and dad talking about my pain level, and my dad said that sometimes he doesn’t want to ask how I’m feeling because he knows it’s not good, and he doesn’t know how he can help. I can’t imagine how hard it is for my family to sit by and watch their child/partner sit in so much pain that she can’t even get off the couch. Some days the pain is so bad from the moment I get up that I just want to sleep the day away and wake up the next hopefully feeling better. BUT if I don’t move my body, I also have pain. So confusingggggg and so hard to push through the pain some days. I’ve been open with my family with how I feel some days and how hard it is just to put one foot in front of the other. I’m working towards feeling better and getting my pain under control.
My mom mom deals with rheumatoid arthritis and understands what I feel. I’m glad that I can talk to her and she KNOWS exactly what I’m feeling.
Happy Tuesday, and if you are fighting pain today, know that I am with you and understand you.
For years people have been telling me to visit a chiropractor. I was born with a fracture in my spine, and it didn’t hurt at all until I was in a rear end accident when I was 19. At 26, I decided to have lumbar fusion (L4 L5 S1). The biggest reason for my surgery was to fix the unstable spine because I wanted to get pregnant (jokes on me because 2 years of trying and nothing came of it) but now after surgery I am left with a stable spine that hurts SO BAD. I’m so stiff, the nerve pain and damage is outta control, and so on.
My husband has been going for years, but I’ve never went because my surgeon said after the surgery to not let a chiropractor touch my back. Well now with the pain from the mixed connective tissue disease, I decided to try it.
Holy crap was I not expecting the outcome. I mean kinda, but I didn’t think it would be that bad. During the appointment the doc only felt the pressure points in my back, adjusted my neck, and used stim along with some easy stretches. I left feeling fine but by the time I reached my driveway I was feeling everything but fine.
My autoimmune disease attacks anything new to my body, and I’m not sure if it didn’t like the appointment or what but I felt like the flu was coming on. Hot and cold, so.much.pain, achy, irritable, headache, and so on. Bad shape.
But by the next morning I was feeling fine. I plan on going back, but definitely letting the doc know how I felt afterwards. When we first met, he made sure to stress multiple times that the communication has to be good with us for this exact reason.
Here’s hoping next time will be better! Have a good weekend 😊
Anyone who suffers a chronic illness like I do knows that most of the time we have to manage it with medicine just to get through our day. Over the past couple years after my diagnosis, I went from taking a few meds and vitamins a day to now 2 pill sorters. It’s insane but something that I need to do to help curb the side effects of my illness.
So for the past year, I have noticed that my stomach has completely changed. I used to have a very sensitive gut and had IBS (irritable bowel syndrome). I now have gastroparesis (a veryyy slow moving system) combined with a small stomach. By dinner, I’m usually still full from what I ate the rest of the day. That never happened before.
I’ve been having issues on the right side of my stomach. I’ve had all kinds of images done and it showed some stool in there- so time for a colonoscopy to see what was up. I didn’t even know this could happen— my intestines weren’t empty and I had to do a repeat colonoscopy with a 2 day prep.
So right now I’m in the heart of prep. I’m getting so sick because my stomach can’t empty all the fluid that I need to drink. Basically I’m a mess over here and I’m hoping I’m all cleared out for tomorrow’s procedure and I can get some answers.