Still Exhausted, But Relaxing

Cottage_Small

Still exhausted, but on vacation in Waldport on the Central Oregon Coast. When we arrived in Portland, before we drove out to the coast, we stopped at the Willamette National Cemetery where my brother-in-law is buried. The cemetery is beautiful, surrounded by trees with a view of the Cascade mountains in the distance. We said goodbye to Don, held hands, and silently prayed. Don, we love you, we miss you. Thank you for your service to our country.

DonGravestone

We are visiting my husband’s parents and have rented a small charming cottage, near their home. If I climb up on top of this cottage’s carport, I can see the waves in the distance through the power lines. The skies are overcast and air cool, clean, and damp – a far cry from the sunny, hot, dusty part of California we call home – a wonderful respite, actually, perfect for slowing down and taking a deep breath.

Cottage view from carport of street, cottages across the street, telephone and electrical wires, trees, and ocean in the distance

My son and I are recuperating from last week. On Friday, he underwent an endoscopy of his upper gastrointestinal tract (EGD). Both the procedure and the taking of biopsies have left my son with a sore esophagus, making it painful for him to swallow. Poor guy. Hopefully, his esophagus will heal soon, and his post-op pain will be short-lived. His pediatric gastroenterologist said that my son’s upper GI tract looked healthy and the photos he took looked good to me (pink and intact, no ulcers), which is reassuring since he has regularly thrown up his whole life, due to migraines, acid reflux, and gastrointestinal illnesses. For the last few years we have medicated him with omeprazole to reduce his acid reflux (GERD).

When we visited my son’s pediatric allergist/immunologist, we learned that her assistant misinformed me over the phone that my son’s lab work was negative (that his tests showed no immune deficiencies). In fact, his lab results indicated elevated lymphocytes, probably due to a viral sinus infection which the doctor is treating with nasal irrigation and antihistamine (azelastine) and corticosteroid (fluticasone propionate) nasal sprays.

Worse than the viral sinus infection, my son is deficient in all tests for pneumococcal antibodies, so he received a Prevnar-13 vaccine. Four weeks following his vaccination, he will get follow-up lab work done to see if he has built up antibodies to the 13 Streptococcus pneumoniae the vaccine targets. At that time, his pediatric immunologist also ordered the mono test panel which includes testing for the Epstein-Barr virus (EBV) and cytomegalovirus (CMV).

The lesson I learned here is not to simply and blindly listen (split infinitive purposefully used) to someone giving you a summary of lab results over the phone. See the results yourself and have them explained to you. My son’s lab results clearly showed problems – problems which we are now addressing.


Comments

33 responses to “Still Exhausted, But Relaxing”

  1. Thank you so much! I truly needed that validation. Sometimes I feel like a salmon swimming upstream. I do get there though and keep on going. Unlike the salmon, I intend to live a long life and continue to contribute.

  2. swtswtsue Avatar
    swtswtsue

    All this time I thought I was following along on your journey! I guess I was although it wasn’t “official.” 😉 I’m a bit scattered at the moment (all moments, really), so I don’t remember if I told you just how much you deserved a break…

    You work so hard, Kitt – for you, your family, and all of us. I truly admire your dedication. It inspires and motivates me to keep on keepin’ on. From the bottom of my heart, thank you for that. Simply put – thank you for being YOU! <3

  3. Salem is very hot right now. Unseasonably so.

  4. Nope, I’m nearer to Salem. It is very hot here right now.

  5. Thank you. My mother has been telling me for years to keep copies of medical records. She is a cancer survivor, and is alive in part due to advocating on her own behalf.

  6. Thank you so much, Ellen.

  7. Kitt, So glad you are relaxing and got good results from the endoscopy. And great that you are really getting to the root of the poor immune system. Good luck, courage and deeply relax, all of you. You are a super Mom. I learn from you although I have no children. One has to be proactive with doctors. Enjoy every moment!

  8. I’m glad that you’re enjoying your time away and that your son’s test is over… It’s so good that his doctor is being thorough so at least you know what to rule out. I always now ask for copies of test results, precisely because of what happened to you…. Diane

  9. Yes, it does help.

  10. Thank you, Yve. You, too!

  11. My mother, who is a lymphoma survivor, uses meditation to overcome pain, too. Excellent practice.

  12. Thank you, Sonni. My son is 14. He has struggled with migraines, allergies, asthma, GI issues, & ADHD (now depression & anxiety) since he was a toddler. I’ve done my best to attend to his needs.

  13. Absolutely!

  14. It’s exhausting having to be the advocate, always questioning the information you’re given. Ugh. But, you’re right, it’s good to have a reason for your son’s ills. I prefer a clear target to punch, too.

  15. Kitt, I’m glad you’re enjoying the ‘pause’, I’m sure it’s needed.

    Good luck with your son’s recovery. With a mom like you by his side, the road will be a little easier.

    take care of yourself Kitt.

  16. After reading more of the comments. I deal with chronic pain – i have for many years. It’s a part of my life. I work hard to not succumb to depression although sometimes it creeps up on you. I often wake up in the morning and the tears just start flowing and I can’t stop them because I want it to be over. So I sit and start writing, I chant ( I’m Buddhist so I center on what I want to change in a positive way – because Winter always turns into Spring no matter how long winter is. I work in my garden and write music. So the only way to combat it is to make the positive overpower the negative because your brain can’t process two different feelings at the same time.

  17. This is the only post I’ve read so far so I have no idea how old your son is. It is hard to have a child who is sick,no matter how old the child is. I, too, have had to endure a difficult medical history and I know how tiring it is to have to spend so much time in medical offices and going through test and procedures. I may be almost 61, but my mother is still alive, and to her I’m still her little girl and i know how hard it has been on her. We, as parents, no matter how hard it has to keep pulling it together and do what has to be done. Not easy, but it’s what we have to do. i wish you the best and will keep on reading. Also – thank you for coming to my blog – when we do that for each other it opens up a little more of the world.

  18. I saved that for today. 🙂

  19. Yes. Thank you, e.

  20. Super yum! All of those treats sound absolutely heavenly….especially the dark chocolate fudge! 😉 XOXO

  21. How nice Kitt! Progression and peace…

    Miss ya,
    e

  22. Thank you so much!

  23. Hard for my tongue, too. Even harder to spell.

  24. stuckinscared Avatar
    stuckinscared

    Hi Kitt, I’m glad you’re getting some breathing space, (and in such gorgeous surroundings too) sounds like you need it. I hope things improve for your son soon, good on you for pushing for accurate results and treatment.

    I’m so sorry for your loss Kitt… x

  25. Relax Kitt, ah death this painful and yet inevitable end to life. Thanks for sharing about your son. Wish the lad so much better – some of his ailments and treatments are even hard for my tongue to pronounce. Xoxo

  26. Good for you in addressing your daughter’s vision issues! By the way, I still sit back and eat bon bons. Today, it’s dark chocolate and coconut handmade candy and hot cinnamon flavored salt water taffy. Haven’t yet broken into the dark chocolate fudge. (Yes, we made a stop at one of the many coastal Oregon candy shops.) Lunch was shrimp and dungeness on fresh sourdough bread. Yum!

  27. When our plane landed in Portland, it felt like we walked into a sauna. Do you live in Eugene?

  28. Thanks for the invite, but I’m enjoying staying still, as are my husband and son. My son experiences mild to moderate depression and anxiety, as well. Chronic pain and migraines often co-exist with depression. Pretty depressing to live with chronic pain, as you can imagine. Severe depression is a form of pain, so I’m sure you can imagine it.

  29. Thank you so much, Eli. We are relaxing. Much needed respite.

  30. My dear, I was so moved by your description of your visit to your brother-in-law’s grave and for remembering him with such love and respect. I’m glad he’s at peace in such a beautiful place. I thank him for serving our country as well.

    Good for you and your husband for renting such a lovely spot. It struck me as a great idea so you’d have your own tranquil space apart from your mother-in-law & father-in-law. (I’m sure they appreciate it as well.) I love all the pictures and I’m relieved that you’re relaxing….

    What a valuable lesson you’re sharing with us about the conversation you had with the assistant. How critical it is to demand a thorough explanation with any medical professional, whether it’s the doctor or assistant. I hope your son will build up the necessary antibodies a.s.a.p. I applaud you for being an outstanding, loving mother who doesn’t just sit back & eat bon bons, but does extensive research, and is proactive, taking the absolute best care of her son. You’re inspiring me to do the same. I found out on Friday at my daughter’s eye appointment that she has two eye problems that can be potentially serious. I’m doing some research before we follow up with her optometrist so that I can be prepared as much as possible.

    XO you!
    Dy

  31. You’re vacationing only about 60 miles from me! Sure wish you could come by before you go home (I know about living in SoCal too) but its been so hot inland that it would remind you of home. Not comfortable because almost no one has AC in their houses. Anyway, enjoy the rest of your trip and please drive safely.

  32. i feel sad to hear about yours son’s situation. i had a conversation with a friend who suffers with depression and and chronic pain. she basically claimed i could relate to the chronic pain since i hadn’t lived it. I reminded her of the commonality of two, people living with chronic pain just want it over. I feel for your soon.

    hey! if you want to drive three more hours north, we can go out of coffee or something. well, I guess it would have to something since i don’t drinks coffee. 🙂

  33. Your vacation spot looks beautiful, Kit. I’m glad they’re on the right track for your son, Keep us updated!

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