Making Time for Mom - POTS edition

I've posted a couple of times previously alluding to some health struggles I've personally been facing. For the last couple of months, I've not been feeling well. I have periods of time where I am extremely short of breath, dizzy, and my heart rate becomes pretty elevated (in the 140's). I've also been so fatigued that it sometime feels like I'm swimming through Jello. I've also had some significant GI problems for the past 18 months-2years that initially got better with a gluten free diet in June 2017. Symptoms have slowly returned and remain intermittent. And either in addition to that, or perhaps caused by it, I've lost over 35lb in the past year and a half. Sounds great, right? Weight loss you don't have to try for? Except I weigh less than I did in high school, my hair feels like it's thinning in the front, and there is no way I'm maintaining my nutrition with this kind of weight loss. I was never overweight to begin with. I now weigh 110lb at 5'3". Not too thin, my BMI is still normal. But I've lost my curves and my clothes are hanging on me. Well meaning people keep exclaiming over my weight loss, asking if I'm okay, tell me to eat a cheeseburger. I'm 100% not offended, but sometimes it makes me feel awkward and I'd love to gain back a good 15lb to feel healthier!

I saw a GI doctor and am scheduled for an upper GI scope and a colonoscopy next month. She was almost apologetic for needing to do a colonoscopy, but said she really has to because of the unintended weight loss. I was like, "Yes! Please! Lets do it now! (kidding!)" But seriously, I'm all about doing something to find out what's making me so sick. She's going to biopsy for celiac, EOE, look for indications of Crohn's or ulcerative colitis. Obviously rule out terrifying things that can cause unintended weight loss.

I also saw a cardiologist. He ordered an echo, a holter monitor, and a tilt table test. Results? I have POTS. Postural Orthostatic Tachycardia Syndrome. Basically, when I stand up, my heart rate shoots up too quickly for my body to compensate and I get dizzy, short of breath, and sometimes have what they call pre-syncopal events. My vision goes completely black, my head rushes, and I have to hold onto something so I don't fall over/pass out. This has actually been happening on and off for years. 10 years ago I sought treatment and the physicians assistant I was seeing was amazing. He started me on a beta blocker and it did help with my heart rate. Unfortunately, my blood pressure was way too low to continue the medication. I saw a cardiologist at that time who said everything was fine, and I was basically too young to be sick. About 5-6 years ago, when I was working in the hospital, I had some episodes of dizziness and pre-syncopal events. I saw a cardiologist at that time who told me I was too healthy to be sick and that it was probably anxiety.

And you know what? I DO have anxiety. Show me a special needs mom who doesn't. But I knew it was not responsible for my symptoms. It's extremely discouraging to have multiple medical professionals discount and invalidate your symptoms. It made me feel like maybe I was a hypochondriac. This time though, has been different. It's really disrupting how I live my life. I feel like I'm a crappy coworker lately because I'm sometimes to dizzy to do my whole job. I often can't take my kids to the park because I know I'm not going to be able to stand up the whole time, or I'm going to get short of breath and feel like I might pass out. Or I'm not going to make it through the whole grocery store without feeling sick. Or my GI symptoms might act up and I won't be close enough to a bathroom. I've had vacations ruined because I was too dizzy and/or sick to do anything for any length of time. We were shopping on vacation this summer and my mom had to drive me back because I was really dizzy and my heart rate was hovering around 130. Lauren and I haven't been able to take as many bike rides as we like because I can't make it around the block. I miss being able to do the things I really want to do. If I overdo it one day, I pay for it the next and it's really not always worth it.

So, now I'm diagnosed with POTS. I really like my cardiologist. He started me on two different medications. Midordine, to try to increase my blood pressure. And Florinef, to try to increase my blood plasma volume. My cardiologist said that my body behaves as if it's extremely dehydrated. I'm supposed to drink a ton of water and greatly increase my salt intake (life dream, I love salt). I go back in 6 weeks and he's hoping my blood pressure is high enough to add a beta blocker, if I need it, to bring my heart rate down.

I'm trying to be kind to myself. I restarted therapy to help me cope with my life stress that never ends. Greg's helping out more at home with things I really just can't do (like carry 60lb Lauren up the stairs most days). I'm really trying not to push myself. We were at the park recently, the kids were playing, and I sat down in Lauren's wheelchair because I felt dizzy. I got a couple strange looks that bothered me at first, but then realized I truly give no F's about what someone else thinks about me. I posted a link below from Dysautonomia International about POTS if you want to learn more!

http://www.dysautonomiainternational.org/page.php?ID=30

Is it fall yet?

Summer is coming to an end and I am really excited for fall to start! I love the season - the rustle of the leaves on the sidewalk and the chilly, crisp air. I LOVE fall. I almost bought some potted mums and a hay bale today while I was grocery shopping, but then I remembered that it's still August and I need to calm down. I also can't wait for my kids to go back to school. I feel like my kids, along with most, thrive with a schedule and summer time is always wild here. The kids are so busy with therapy, camps (for Ryan), traveling. I know things will get busier once school starts, but in some ways I feel like it calms down a little bit because we know what to expect.

Lauren saw her cardiologist today for her yearly visit. Her doctor told me to go home and read Psalm 100, a thanksgiving Psalm about God's goodness. He said her repair is one of the best he's seen in his 42 year career and the results couldn't be better. When I think back to how sick Lauren was during the weeks surround her surgery I can hardly believe she's really doing so well.

Ryan's in a computer camp and really liking it! I signed him for for an engineering class locally that starts next month, he's really excited about it! There are different class options offered every month, so he already found three of them he wants to do for September, October, and November. I'm so glad it seems like we've tapped into something he really likes! Some kids like sports, my kid likes computers. He seems to have really found a niche and something he can excel in!

We've been going up north when we can on weekends. We'll go this weekend, but staying home Labor Day weekend because it's "moving up" week at church and Ryan really doesn't want to miss it.

I'm working through my health issues, having good days and bad days. I had some cardiac testing done and was found to have POTS. I follow up with cardiology next week. I also saw a GI doctor and am having some testing done next month. Hopefully I'm well on my way to being on the mend!

This is us

We've been having a pretty good summer! August is our busiest month it seems, so I'm pretty ready for fall and school to start. I love my kids...but I miss my Wednesdays to myself.

Ryan has been doing AMAZING! We treated him for a PANDAS flare and he's totally back to baseline. He was a bit snippy with me yesterday and today, and apologized unprompted both times. The funny thing is that now that he's back to his old self, his little quirks are back in full force. I love it because that's how we know he's happy. He toe walks, makes noises all the time, and is big into physical affection. He actually cuddled me today while we were at OT waiting for him to get called back. It was awesome!! OT is working on handwriting and core strength. He's currently in a day camp, Minecraft Camp, at our local rec center. So he's learning to to build a Minecraft server, something with LAN, coding, and other computer words that mean nothing to me. But he loves it! He called me after the first day and said, "Mom! I wasn't nervous at all and I made friends with everybody!!!" The excitement in his voice made me tear up. I found out he's the oldest kid in the class by a year or two, and I was hoping for more same aged peer interactions, but I'll take it! He has a week off and then goes to another computer camp the following week. I love that we've tapped an interest for him! We've tried every sport under the sun (gymnastics, swimming, hockey, soccer, baseball) and he just does not do well in team sports. He is starting to try golf with my dad and he really likes it. I've noticed a little more struggles with eye contact with adults lately, so that's taking a little social coaching, but nothing we can't handle. He has a good friend in our neighborhood that really seems to draw Ryan out of his shell, so I am super hoping they get put in the same class in the fall. At his school, every grade has 4 classrooms, so it's only a 25% chance. He's still a giant and is probably around 4'8" tall and right around 100lb. I bought him some school clothes today and I tried on a shirt of his that we might have to fight over, LOL. His feet are officially bigger than mine now (and I wear a women's size 8!)

Lauren has been awesome. She's walking so well, but her gait is terrible. She has the cutest little walk on the entire planet, but it's hard for her to get from point A to point B. She's wearing her brace probably 75% of the day while she's awake. We're hoping she might lose some weight now that's she's walking so much better, after not walking for 3 months. It goes without saying, obviously we view her weight from a health standpoint only. I am going to set up an appointment with a dietician to discuss portion size, food choices, etc. She'll eat pretty much anything but she's been eating adult man sized portions since she was about 10 months old so I admit I'm not really sure how much I'm supposed to be feeding her. She doesn't have a "full sensor" and would legit eat 24/7 if I let her. Today I was successful with chicken breast and veggies, along with salad for dinner. She had grapes for a bedtime snack. She asked for chips, but I said no. I'm so proud of myself! This is hard for me! She's in speech therapy, occupational therapy, and physical therapy each once per week for the summer. Hence why we are so busy! I was able to coordinate her PT and speech on the same day, and Ryan gets OT while she's getting speech. This will not be a surprise to anyone who knows her, but she loves speech therapy and hates physical therapy. We had to see hem/onc last week because her recent bloodwork was off enough to warrant a consult. Can we stay stressful?! We LOVED the doctor and she said, "I love her, but I don't need to be her doctor." Best words ever. Behaviorally she's been doing okay. We increased her thyroid medicine recently due to her labs, and her energy has majorly increased. Along with that, she's a little more impulsive and has started pinching and scratching again. She even bit my stomach on day. She really hasn't done that it months, so we're weighing the pros/cons of increasing her Tenex. Tenex can cause weight gain. But we need her behavior controlled, especially as school starts up. I think I've been pretty transparent about her behavior struggles, and I feel like we have a delicate balance of her amazing personality shining through vs her ability to be behaviorally successful in her community (home, school, church). She's been bolting away again, which might just be because it doesn't hurt to walk anymore. We were almost spoiled by 3 months of her not walking because at least we didn't have to worry about her eloping. Tonight my sister and I took her to the park and she kept trying to "climb" down a part of the park that is actually a straight drop from the very top of the equipment, probably close to 15 feet high. I tried to physically block it, which made her more angry. My sister ended up sweet talking her down. But verbally she has been SO NICE! She tells me she loves me about 50 times a day. She's nice to her brother. She gave Monte a giant hug today for not eating her dinner while she went potty. Overall, things with her are pretty dang great.

I've been dealing with health challenges myself. I've lost 30-35lb in the past year, most of it in the last 6 months and totally un-intended. I now weigh 112lb, which is less than I did when we got married 10 years ago. I have some pretty significant GI issues that initially got better with a gluten free diet, now it's hit or miss. I've been having shortness of breath with minimal activity, dizzy spells and periods of significantly elevated heart rate (as high as 144 bpm). The fatigue is unreal, but I've been pushing through it as best as I can. As a result, I've earned myself a GI consult (later this month) and a cardiologist. So far with cardiology I've had a visit, an EKG, and I currently have a holter monitor in place. I go next week for a tilt table test, the following week for an echo, the following week for another follow up. And I'm following closely with my primary care doctor. It's been extremely frustrating to just plain not feel good. It impacts my ability to care for my kids and enjoy life. We're currently thinking Crohn's vs Celiac vs POTS or maybe even something completely different. It's really hard feeling like I'm being a bad wife, mom, and friend but I really am doing the best I can. The best way I can say it, and pardon my french, is that currently I give no fucks. I don't wear makeup other than to work. If by rare chance I'm at home with nothing to do, I take a nap if I'm tired or I go to bed at 9pm. My house is often a disaster because it's one more thing I have to fit in at the end of the day and sometimes I just can't. I'm snacking constantly to try to stop losing weight. Gluten free snacks are not as as exciting, but I have found some great things to eat that are a little more calorie dense. If I feel like I can't physically or emotionally do something I just say no. I've mostly been doing what I have to do for my kids, my family, and myself, and that's about it. My parents help a lot when they can. Greg's parents have been lifesavers when we're up north and I can't parent the way I should. Greg has been amazingly supportive through this which I appreciate more than I can say. He's working 6-7 days a week and still being an amazing partner at home.

Overall it's been a pretty great summer and I think we've made a lot of fun memories. My hand is getting better, but my nail is still weird, the tip of my finger is numb, and I have random days of pain. I'm excited for the fall to get back into our normal family routine!