Greetings!
Another week of 2026 has passed. The beginning of the week was more productive. Right now...I feel like Allie--lol! A nap would be nice.
Mainly I wanted a second opinion on my lungs being clear (just to make sure I didn't have pneumonia or something) and on my figuring what I have is likely viral and I am just taking forever to heal because of my compromised immune system. I filled in Dr. Hanna on my history and current methotrexate issues and eye issues. She checked me over. I told her by that afternoon I was doing better than I had the last two days. My lungs were clear as a bell. She agreed that it was probably viral and antibiotics wouldn't help. I asked about something to clear my sinuses maybe? Prednisone. Nope. Steroids and I do not get along well. (Already having issues with the methotrexate I'll explain shortly.) She said whatever I have been doing has been working and to keep doing it. Asked about if I had an air filter. No. Said I can use more saline nasal spray and the flonase more than once a day. I am already on a 24 hour over the counter allergy pill for my sinuses...continue to do that. Basically she thinks that I am taking a long time to heal for good reason but I am headed in the right direction.
After I got home...it was the day my rheumatologist wanted me to message her as to how I was doing. Sent her a long message about weaning off of the methotrexate. Let's just say that besides the not being able to get well and most likely having to postpone my eye surgery this month...I had a list of half a dozen side effects that have become pronounced since I went from 3 to 4 pills a week. The last one being now I have scattered sores all over the underside of my tongue that look like blood blisters. Plus I'm getting the darn rashes again. Time to say goodbye to methotrexate. With the holiday I won't hear back till next week sometime. I'll probably have to decide myself on Wednesday if I should drop to 3 or 2 pills. (I'd rather it was 2 and done.)
I have to decide by Tuesday about calling the eye clinic to reschedule my eye surgery. That is very likely how it will go. I sincerely doubt that I am going to be miraculously well in the next two days--lol! Luckily they have always said 3-6 months for the silicone oil to be in my eye and by mid-Sept it is 4 months I believe. So we have some leeway.
I also have an appointment for the lab again for the rheumatologist on Tuesday. I warned her I may or may not make it. Have to wait and see. I will go if I am not coughing my head off that day--lol! When I have an appointment it is pretty quick...in and out. I fully expect my inflammation markers to be higher. When she met me I had been on the oral steroids for quite a while and had been feeling the best I had in a long time. Of course my inflammation markers were lower. Since then she had me try the lower dose of steroids which I also still reacted to. Since I have been off the steroids my inflammation has increased. No surprise to me. It has obviously been high for ages...hence the inflammation even in my eye. It has been really high ever since immonotherapy for the cancer. Five years now. I still have mucositis (dry sticky mouth) and other issues I have never gotten rid of since I quit the Keytruda.
I am glad she is so worried about my other eye getting inflammation...but there's only so much I can do about it. I have tried diet changes--even carnivore and keto and am still low carb--because sugars feed inflammation. But I cannot live with rashes, mouth sores, increased pain and all the rest. So, that's the state of things right now. I may be trying a different medication in the future (she said the methotrexate had the least side effects--sigh), but I need to get well and have a break before I do, that's for sure. And I don't want to try anything new before I can finally get this eye surgery done.
So--meanwhile...I changed the shower curtain again-lol!
My orders of more small storage containers arrived Friday.
I have things to do and places to go. Really need to feel better so I can do the things I need to do and go the places I need to go--lol!
Leah is better but tired and still coughing some. I told her that the only thing we could maybe do this weekend down here is tear papers in half...and that is only if we feel up to it. Can always do it next weekend, right? I have many projects to keep me busy...if I actually have any "busy" energy. Such is life, right? We do not always have control.
In the meantime I am going to rest up...like Miss Allie does every day--lol!
Wild Card!
Love?
Hummm.
There are endless kinds of love.
Romantic love and marriage...well that never worked out for me. When I was growing up in the 50s as a young girl I thought I would get married to a wonderful man, live in a house, and have a few kids. That was what was expected of girls back then. Truly believed I could do a better job at it than my mom, though--lol! She never really wanted to have to deal with boring kids all day--lol! (Hence me starting to "babysit" my two younger siblings at age five.)
I seemed to attract the wrong men for me. Girls were not supposed to make choices in those matters. You waited until a boy approached you. If girls pursued boys they got a "reputation". Even if I had no idea what that meant exactly, I knew I didn't want one--lol!
I went steady with an athletic boy when I was a junior in high school. He dumped me beacuse I "wouldn't put out". Senior year I changed my tune and decided to ask a "bad boy" to the Sadie Hawkins Dance where the girls asked the boys. Didn't think he'd ever agree to go to a school activity because he was an anti-establishment wild child of the 60s. To my shock he said yes and we went. I was totally unprepared and had to borrow a costume to wear from a girlfriend. We went together most of senior year. Eventually I gave in to the constant advances when he threatened to break up with me. Already had the first boyfriend do that so I believed him...and I had truly fallen madly in love and in my heart believed we were meant to be together forever (or I never would have slept with him!). He dumped me, too. Seemed to be because he didn't want to get married or settle down and even though I didn't talk about it he said he just knew that's what I wanted. Men. Who can figure them out. Not me, obviously.
Right after we graduated and I had turned 17 I was grabbed off the street by three older guys in a car while walking home after a beach dance at the lake a few blocks from my home...beaten till I passed out, raped, and told they were going to kill me when they were done with me by the leader. The third guy refused when it was his turn...long story...but I am still so proud of him that I can get teary-eyed just talking about his bravery. (He got punched a couple of times.) That taught me all about a different kind of love.
That's the kind of love I have always been better at. Loving human beings. Empathy. Feeling love for other souls on their paths. Spiritual love. Soul love. I think I have had all kinds of experiences in this life to help me with that kind of love and forgiveness and compassion. I was never destined for the house with the picket fence and the 50th wedding anniversary, I guess.
What have I learned about love? I didn't need to be a 50s wife. I learned how to forgive my parents, the men in my life, the rapists...but I still have trouble with people in positions of authority who are cruel and abuse others. I still have trouble with liars. I know they have their own pain and weaknesses and fears, but they are all still the hardest for me to forgive and feel love towards. So...love is the most precious, positive, and beautiful thing on this earth...but I still find myself succumbing to judgement, negatives, and ugly feelings. It pains me that people would waste their soul energy on such darkness...but then why do I do it back?
I am still learning about love.
Till next week, my friends. :) :)
9 comments:
So sorry to hear about the need for a trip to the walk in clinic. I sure hope things can clear up for you soon. I feel like a bit of a sissy complaining about the one health issue I have in comparison to what you're going through.
With age i have learned that i have a difficult time recognizing love... many emotions can mimic love but they go by other names... the only true love i have found in my life is my husband of 37 years... he taught me the meaning of love...... Hugs! deb
I could not take Methotrexate either next they will try Arava or Leflunomide. I failed that one too. Hope they find something that works for you. I hope your upper respiratory symptoms go away.
I do hope that you can get more relief from all of this sickness. It sounds like you have a good team now. I love all your organization containers and what you are doing with you place. I am so sorry about what happened to you. It happens to many of us. As for forgiving or hating someone that is long gone. They have no idea that you feel this way and the only one it hurts or helps is you. I don't feel like I need to forgive people who did horrible things to me. I wont' give them that even though I'm the only one who knows it. If harm is done to me they are just OUT. Out of mind, out of spirit. I personally don't think it has to do with love. Love is for those who has earned my trust, has compassion and respect for me. It might sound tough but I have lived a tough life and I refuse to allow people in my life that are bullies. With that said, everyone has their own path to walk when it comes to forgiveness and love.
You have been on a roller coaster of feeling badly the past week, Rita, and it is nice that you found medical professionals who actually listen and care. I am hoping that the eye surgery goes well when it happens. Those new containers stack nicely and you sure have many. I am spending part if this holiday weekend sorting through holiday stuff to donate before the season.
You had unfortunate experiences in high school with those who mistook lust for love. The experience of the beating and rape was so sad to read about, my friend.
There is a lot going on in that post, from your health to your history of love. I am sorry you had to go through that. People suck, no way around it, but there are still some good ones out there.
It's great the healthcare professionals take your illness seriously, but I wish this darn cough would go away. Is there a chance an air purifier would help? The shower curtain is cute, and you're making progress with your organization and putting away. You're not the only one who ended up with the wrong men. I was involved with a real jerk before I married X, and you know how the marriage turned out. The jerk was during my senior year of high school and most of my freshman year in college. I still rue the day I allowed him to be part of my life.
Love,
Janie
When in doubt, follow the lead of a cat. I'm sorry to hear that after a good few days you're back in the down side. It's concerning, knowing you are having effects with the med that supposedly has the least, but we're all different and maybe another is worth a try. Meanwhile, we've got to get that eye in gear. You are courageous to share your deeply personal story and I admire that you have been able to forgive those who hurt you. We all have times when we "regress" in our thoughts. But you see light and it brings you back.
Feeling unwell isn't nice and can drain our motivation but you still seemed to have done a fair bit despite feeling yuck
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