Apologizing now for typos. I only proofread this once because I need to go rest!
The photos Jake, Emma, and I got done last Tuesday, ending up in the ER after said photos, traveling all day Sunday… It all seems to have really upset my fragile immune system. My throat still kills! Ouch, ouch, ouch! At times it feels like it hurts all of the way up my throat and into my head. I’m having a fun time, but it’d be lovely if that fun time could include not having my pain level increased each time I talk. It doesn’t really stop me from talking though. HA. I am the girl who often does not notice when she has strep throat when I am in one of these rough patches because it doesn’t feel any different. The pain, I believe, is from the lymph node swelling. It isn’t a allergy or cold type of sore throat or a “raw” feeling. It gets worse and worse as the day goes on. I can feel it get progressively worse just from doing something like standing or walking. During flares, when I am standing or moving around too much, every 30 seconds, the pain goes up about 1/10 of a unit. Doctors have speculated I have some sort of virus living in my lymph nodes and, during rough patches, when I do pretty much anything, except for nothing, my immune system isn’t able to keep the virus suppressed. In other symptom news, The fatigue is pretty severe, but I have plenty of experience fighting through that and have my buddy Adderall to give me a fighting chance. Typically, the “new” Jackie (the Jackie born when I had to quit my job) rests when the fatigue is bad and the throat is sore, but I’m not taking that approach while in Dallas. I fight through the fatigue for an hour or two after my sessions each day so I can enjoy myself, then I rest.
Anyways, at least my armpits lymph nodes are not swollen anymore. I’ve been proactive with the fever and take Tylenol in the morning and some in the afternoon to prevent it from rearing its ugly little head. I haven’t been nauseous, lightheaded, or gone into pre-syncope. It’s nice I haven’t had these three Dysautonomia symptoms at all because they are not possible to ignore, fight through, or enjoy yourself despite of. POTS is clearly going down, and I’d like to say to whatever this immunological issue is… you’re going down too, I just don’t know what you are yet. However, I will find you.
Well, that is what is going in my body, but you’d probably like to hear about The POTS Treatment Center. I’m going to share the logistics of my past 2 days and at some point in the future, I will fill you in on all of the details of my appointments, anything I may have learned, and the doctors’ thoughts. I am not really making any progress compared to how I was doing with the treatment at home on my own. It is clear a major reason for this is likely my immune issues. However, I’m hoping my experience here right now will allow me to make progress in the future once my lymph node/fever/fatigue situation is in less of a flare. Compared to the third day last time I was here, I am SO much better. That’s what is important. My health is generally going in the right direction, I don’t need to hyper-focus on the speed at which I am doing so.
Yesterday, in addition to the normal routine, I did some sitting-standing training. My orthostatic intolerance is a POTS symptom I haven’t seen much improvement in thus far, so with my current flare, this training takes a toll on me. My poor little heart hops right up to the 120s within seconds of standing. POTS is a bully! I stand as long as tolerable, I sit, I breathe, I try again. The biofeedback specialist sits nearby and coaches me on ways to stand differently or breathe differently. I am learning to force my heart to beat slow despite my physiological body signals, such as the adrenaline released into my blood stream in response to standing, telling it to beat really, really fast. As you can imagine, it isn’t easy! I can’t wait until I get the hang of it and I wish I wasn’t in an immunological flare because I think I’d be getting more out of it. On the contrary, maybe I am fortunate to be attempting training during a rough patch; I’ll know how to handle myself during flares and then when I’m doing better, it’ll be easy breezy. Let’s go with that notion.
After my session, I came back to the hotel and rested. An hour later, my Dad, who I think was a bit nervous, handed over the car keys to me. Yes, I drove in Dallas, and (accidentally) on the big, giant, unfamiliar freeway! I picked up my fellow POTSie who is in town for her follow up week as well, and we went and got pedicures. It was one of the most POTS friendly activities I could think of. It was fun to have some girl time with her. We have similar personalities and mesh really well together, and both happen to have POTS, so it’s a good match. My fatigue and lymph node pain were ever present, but I was so happy to not have completely debilitating symptoms such as lightheadedness holding me back, allowing me to push through. Don’t get me wrong, most of the time (if you’re not a wuss about symptoms) I don’t think “pushing through” is the best choice, I think resting is. However, my friend and I live in different states, so exceptions were made. Despite it being a challenge for my body, my spirit needs some loving too. My throat killed by the time I got to bed, and thankfully, I slept 10 hours last night!
Today, I decided to have a relaxing morning and threw my hair in a bun and wore yoga pants for the day. The first thing I did during my session was the heart rate variability training with my feet on the ground. Like I said, when I’m in a rough patch/flare, things such as this make my throat become progressively more and more painful. However, what am I going to do, come to the treatment center, fork over two grand, and just do nothing? I don’t think so. It went alright. Then, we did some training while lightly exercising. The exercise in use was one of those pedaler exercise machines you put in front of a chair and pedal on. While hooked up to the heart rate variability software, I’d pedal for 5 minutes, break for 5 minutes, pedal for 5, break for 5, then I was done. Instead of taking the breaks with my feet on the floor, I propped them up on a shelf. It wasn’t easy and I glanced over at the nice comfy recliner so many times, but I really wanted to learn more about what to do during exercise to make it more tolerable. I used to exercise 6 days a week for an hour each day. Strangely, the results of this
torture learning experience were never talked about, but maybe tomorrow is when we will do that. Here’s the screen:
After my appointment, my Dad and I went to Whole Foods for dinner and to grab some items the doctor had suggested to boost my immune system. Next, we went to a discount bookstore because I’ve finished 2 of the books I brought with me and the other 2 are complete duds. I can’t get to sleep easily without reading first so I was in a state of emergency! I was going to pay for them, but at the checkout, my Dad gave my wheelchair a push. I went rolling off while he secured his spot in front of the debit/credit card reader. The cashier didn’t laugh. He probably was thinking, “Poor little handicapped girl.” My Dad and I laughed enough for three or four people, so no loss there. 😊