Hey there (insert lack of enthusiasm here). Remember when I told ya’ll I was sick? Just checking:) I have felt every bit of my diagnosis the past few weeks and it SUCKS! I’m not angry because I have Idiopathic Pulmonary Arterial Hypertension but I am mad at how it affects me daily.

https://pubmed.ncbi.nlm.nih.gov/24037625/

I haven’t been feeling myself recently and I need to figure out why. I constantly have to rule out side effects of medicines and progression of the disease. That’s why I haven’t written in a while. I have pretty much been working part time as a substitute (one of the only things that keep me sane btw:), coming home, going to bed, and waking up. I have been cancelling plans, not interacting with anyone, and my bestie is going to need therapy because I have been relying on her for therapy.

Side note: I love the babies at school:) and yes, my high schoolers are my babies. I am mostly at the larger high school in town (we have 3) and my boys graduated here many moons ago. My only regret is not doing this when they were here. Teachers, Coaches, Paraprofessionals, Administrators, Nurses etc. have been called in some way to do this. I have been blessed to have been asked to do several long term substitute positions in my field of study which only reinforce I am in the right place. I will do this as long as my body allows.

Back to the point, in the past 4 years, I have had several hospital stays per year ranging from “I over-reacted” to pneumonia to respiratory failure to right heart caths to MRI’s to lung scans to regular heart echocardiograms to even having a salivary gland removed on one side. No, that was not a typo and yes my “spitter” still works, if only on one side:)

I was talking to a new co-teacher yesterday, such a lovely lady, and discussing this journey and one of the first things she said was that she would have never known. She’s right because I disguise things as much as I can. I am not exactly sure why. Maybe I feel it makes me look weak (I know, irrational) or maybe undesirable in a way? I am not embarrassed of this struggle. Maybe we can break that down another time. Anyways, I went home, went for my daily walk (regardless of how long or how short, it’s something I have to do – being sedentary is one of the worst things I can do) and I gave myself permission to grieve what I had been feeling recently and to handle things as I experience them.

That last statement is important because in my habit of “hiding” my symptons, I tend to wait until things become an absolute emergency, not always, but usually long enough to give my irrational thought process it’s time in the spotlight. And then there’s the “list.”

• Who can take me the 3 hours to the hospital
• Who can pick me up if I get admitted
• Who is going to watch my dogs when given an undetermined date of release if admitted
• Is my medicine no longer working?
• Will I have to go back on a central line (that is where the meds are pumped DIRECTLY into your heart – I have done this, it is not fun)
• Is this visit going to be the visit where they tell me it’s time to look at other options with the other options being a transplant – lungs or both lung and heart

So I have an appointment with my specialist at Emory (Atlanta, GA) in May. I have some sort of appointment every 4 months where I go through a battery of regular testing. The past few visits have indicated my average oxygen levels are getting lower which is not the direction they need to be going. I am not on oxygen 24/7, however, I was a year and a half ago. Now, I monitor daily and when it drops, especially at night, I have a concentrator with which I can supplement. I also have a portable I can take with me on walks if need be.

This is my list, real talk, of things I want to discuss at the next appointment:

• Short of breath, more so than regular
• Having to limit stairs as they are becoming more and more difficult to climb
• Fatigue is more extreme (sleeping 15 hours)
• Severe nosebleeds not associated with oxygen use
• Headache all the time
• Feels like retaining water in midsection even on low salt intake diet
• Nausea that is worse in the morning
• Slight skin yellowing at times
• Sometimes a light, not raised rash, cheekbones and bridge of nose
• increasing palpitations (light exertion)
• Out of breath after 1.5 miles on flat ground

Many of these things such as stair climbing and walking long distances were former goals that I crushed in the beginning, I am growing nostalgic for those days.

LIver and Kidneys are always a concern with the amount and types of medicines I am on and sometimes symptoms increase when you are on too much medicine! I am hopeful that this is the reason for many of these things so cross your fingers for me!

I am always hesitant about the not so fun details about my illness but then what would be the point in not talking about it? I pray everyday a cure is found, and not to be negative, not for me but others. Most likely my main focus will be prolonging my life as long as I can and I have motivation to do so! What would my children do without me to annoy them…and trust me , I do! I can’t wait to be a part of my future grandchildren’s lives (none on the way yet:) and quite frankly, I’m just not ready to go. I am not scared to die, I am scared of missing out on the beautiful things life has yet to bring.

Have a wonderfull day and Bye Y’all! With much love from the ‘Boro,

Wendy