It’s been awhile since I’ve just done a good old fashioned health update. Overall, I would say my health has slightly declined since I last checked in. Despite this, I have faithfully continued following “the plan”. Over the past 3 weeks, I’ve only missed one workout. That’s not so bad for a girl who can hardly get out of bed. I’ve been working on making charts to track my exercise and symptoms. I’m planning on sharing them with everyone in a week or two. Since I’ve been in bed so much, I have watched every season of Big Love. I loved the show and am now dying for a lightweight short robe like the ones the character Margene is always wearing!
I’m having trouble keeping my weight up. When all of this started, I was a healthy size 4. I have lost about 20-25 pounds. I’ve lost 5 pounds in the last week or two. I really cannot afford to lose anymore weight. I know some people are wishing they could be me and be struggling to gain weight rather than struggling to lose it. I will trade you positions (you’ve gotta take POTS and the weight loss) in a heartbeat. Just contact a genie and get back to me.
The symptoms causing me the most problems right now are my endurance, fatigue level, brain fog and heart rate. My endurance is at an all time low. I am not standing for more than 3-5 minutes at a time. It takes me an extremely long time to complete the smallest tasks. For example, clearing the bathroom counter today took 30 minutes. I had to keep taking breaks. My fatigue is also at an extreme level. By the end of the day, I have to talk to myself, pepping myself up in order to do things like get up and get a glass of water. My heart rate has been nuts! It’s been 150 when I stand up for 3 minutes. It is jumping about 55 beats from lying down to standing up. There is a constant pounding in my chest.
The brain fog is the symptom that upsets me the most. I can’t remember things. I couldn’t remember that Jake and I looked at a house to rent in broad daylight. While in the middle of a conversation, I will forget what has already been said at the beginning. If a conversation requires any executive functioning, I just freeze up and can’t think. Executive functions are cognitive processes that regulate and control other cognitive process such as planning, problem solving, verbal reasoning, mental flexibility, task switching, and monitoring of action. If I have time to slowly think on my own, I can come to a concise answer. However, I can’t do it quickly enough to hold a conversation or plan anything. It also makes me a terrible person to lean on if someone is having a rough day. I can’t think fast enough to formulate a response and possible solutions. A few hours later, when I am alone, I will think of exactly the perfect thing to say. Listening to people’s problems and helping them problem solve is what I wanted to do for work for the rest of my life. It was second nature to me, and now even when I think hard about it, I have trouble doing it. It’s pretty upsetting for me to not feel on the ball. Friends, family, some day I will be back and I will help you solve all of your problems, always say the right thing, and fix world hunger.
So the title of the post says big changes. Here they are…
1) I am moving! We are renting an adorable house. The landlords told my parents they chose us as tenants, in part, because Jake and I are so adorable together. Ha!
- I am moving to a town where my sister, best friend, uncle, cousin, and many family friends live. I will be 20 minutes away from my parents and tons of other family.
- I will be able to have company at night when Jake is working, and during the day when he is sleeping. I’m alone A LOT which isn’t healthy. I really enjoy alone time, more so than the average person. However, not this much alone time.
- My parents will no longer need to drive 45 minutes each way to see me. My Mom will be able to help me throughout the week. If I am having health issues, they can be there to help me in 20 minutes. My sister can be there in 5.
- Emma will now only need to be in the car 20 minutes when we have our time with her. We will be able to bring her to our own house on our weekday visits. She is ECSTATIC to have a yard and a house rather than an apartment. The yard has garden plots already. Emma has said from the beginning she wants to plant carrots so bunnies will come. When referring to the house, she says “the house with the carrots”.
- The house has a dishwasher, washer, dryer, and bonus room that will house all of Emma’s toys. We are being provided a lawn mower, so we don’t need to worry about purchasing one of those. My Mom loves gardening so she’ll help me with all that type of stuff.
- A down side is that I am much too sick to pack myself. I am insanely OCD about packing. I never have had anyone help me pack anything. I have all my furniture ready to go and all my boxes and bins by the door when people get here to help me. I’m going to need to let my parents, Jake, aunt, and sister pack for me. It’s not that I think they’ll do it wrong, it just bothers me to not be doing such a big task for myself. I’m so lucky to have people to help me. I’m trying to focus on that instead of the fact I can’t pack myself. It is hard though… I actually am leaving the apartment while they pack because I will have a nervous breakdown if I am here while it is happening. No one can quite believe I am allowing people to pack for me. That shows you how sick I am I guess.
- It may seem strange that I am moving when I am so sick. However, like I said I am not packing or unpacking anything. I will be closer to family and friends. I’ll have a house rather than an apartment with stairs to climb up. I am gaining so much, and really losing nothing… except my sanity about the whole packing issue.
- There is one downfall. Jake now will have a 40 minute drive to work instead of a 20 minute drive. He is making a big sacrifice so that we can have a house (which we have always dreamed about) and so that I will be near my family and so Emma will have less of a commute. I am worried about him driving and being sleepy. I appreciate him and all he does for me so much. I hope when all is said and done, he feels it is worth it.
2) I tried a beta blocker (Propanolol)
- It was AMAZING. My standing heart rate was 98. I couldn’t feel my heart beating. That is crazy to me! It isn’t a cure, but it is something to help with tachycardia while I work on getting rid of POTS. I also noticed the fuzzy feeling I always have was gone.
- I had to quit taking it due to severe abdominal pain. It lasted for 30 minutes at a time and was so bad that I couldn’t move and had to breathe shallowly. It may have been a coincidence that the abdominal pain started when I started the beta blocker. We are looking into this now. I wanted to continue taking it despite this possible side effect. I’d take severe pain and not moving 30 minutes a day over my crazy heart pounding away all day long any day! That’s how much it helped me!
- Since I quit taking it, the fuzzy feeling is back. It turns out the fuzzy feeling is actually mild dizziness. I was just so used to it since it’s been there everyday for 4 years, that I didn’t recognize it for what it was. Having it gone for a few days and then come back when I stopped the medication made it easy to see that the “fuzzy feeling” is dizziness. Who would have thought! There’s still a different feeling I also call “fuzzy”. Maybe I’ll figure out what that actually is soon too.
- I cannot wait to get back on this beta blocker or some other beta blocker. There is almost no side effect that would make me not want to take it.
3) I have internal bleeding somewhere in my digestive tract.
- I am taking Prilosec with the idea in mind that it is a bleeding ulcer. If this is the case, Prilosec will reduce the acid in my stomach and allow the ulcer to heal.
- We are repeating tests in a week to see if there is still bleeding. If there is, I don’t know where we go from there.
- I was so angry to hear this news. I had myself a good cry. Not because I’m scared of what is wrong with me, but because it is one more thing on my plate. I have enough symptoms to deal with thank you very much.
With all that is going on, I’ve had a tough time remaining positive. I frequently find my brain going down the path of “This is hopeless. You are doing every single thing right. Things just keep popping up despite all of your effort. Perhaps you should consider accepting this as how your life is going to be. Why, why, why!?!?” I’m too sick to really enjoy the fact my little family finally has a house to call our home. It’s all we’ve wanted, and here it is. When I start going down that negative road… I remind myself it could be much worse. At least I am mobile. At least I am surrounded by loving family and friends. At least finances don’t stop me from getting my medication and doctor appointments. At least I can still drive… some of the time. At least I am pretty (I know this is vein, but I gotta take what I can get!) There are so many things that could be worse. So, despite feeling quite hopeless in getting better, I am not giving up. I am proud of myself for sticking to the treatment plan for this long despite not really seeing results. I will continue my treatment plan even if that means doing it until I’m 90 years old. I think once I get on the beta blocker, things will change significantly. I think moving will help a lot because of all of the positive changes it will bring. Someday, I will see an improvement each week rather than a new or worsening symptom each week.
I’m all over the map emotionally as you can see. I’m excited, anxious, proud, thankful, sad, scared, hopeful, hopeless, happy, confident, angry…. All in the course of one day. Oh well. At least I am able to recognize my emotions and what is causing them. I talk to my family and friends about how I am feeling rather than keeping it cooped up inside. I think I am dealing with everything the best as I can, and I’m trying not to ask anything more of myself. I need to just let myself be. This is a new concept to me. All I would expect of anyone else is for them to do what they can and accept help for the rest, so I should apply the same expectation to myself.
I cannot control my situation, however I can control how I choose to respond to the situation. There is no point in choosing to over indulge the negative thoughts. It is healthy to have my “moments”, but choosing to adopt a negative outlook a majority of the time is a terrible choice. Why take the one thing I can control, and choose the negative attitude? I might as well choose to stay as positive as possible about my situation. It keeps my drive alive. Besides… optimists live longer than pessimists.