Life Update

Life Update

Ok, so I’ve updated you all on what we are doing homeschooling wise this year (which has morphed even since writing that, LOL – added a Spectrum Language Arts workbook for ds to cover some holes in the easiest way possible for us).

Now I’ll dive into the crazy that the last few months have been.  Warning: long and whiny.

I guess the biggest news is that my mother passed away right after Christmas. Back at the end of August she had an incident with her heart/lungs that put her in the ICU for about a month. She was very near death but fought and rallied, and after getting a tracheotomy was sent to a specialized rehab in another state to help her wean off the ventilator, which she did. Moved back closer to home to finish “rehabbing.”  She finally got fed up with living at rehab and was close enough to being able to be released so they fought to go home.  She really struggled being home though, and was on her way back to rehab with my father  when she passed away.  She had very severe scoliosis for the last few decades of her life and it impinged on her lung and heart function. She finally just couldn’t fight anymore.

I’m not grieving in any way I’ve ever heard of.  I’m most definitely a complete mess and falling apart in ways I haven’t felt since my most severe bout of post-partum depression,  but my thoughts don’t seem to be normal “grief thoughts.”  I’m just going to leave it at that because saying any more would probably get me labeled a heartless monster. Maybe that is what I am, who knows. 🙁

In other news, my son’s been struggling with side effects of his rheumatoid arthritis and it’s medications, so we have added a few other drugs and are changing around some others. Have I mentioned that I’m a crunchy mama and that having to give my son these horrible things just kills me?   Natural things weren’t working, although a neighbor is going to talk to me about a few other things I might be able to try.  I’m not going to try anything until all our medications are switched and settled in because I need to see what reactions are coming from what.

He’s developed uveitis which is inflammation of the eye. It is somewhat common in juvenile rheumatoid arthritis. It can cause scarring which leads to blindness. Luckily we caught it early and he has started on steroid drops to help it. They are working for now.  He had to take them every two hours at first and now he’s down to 4 times a day which is much better.

He’s also developed a rash that looks like psoriasis. Again, not uncommon in rheumatoid arthritis sufferers, as psoriasis is an autoimmune skin condition.  He’s on methotrexate (a chemotherapy drug, which they just increased because of the eyes) and Enbrel (what they call a “biologic” – it’s a tumor necrosis factor inhibitor that can help JRA sufferers) which is helping his pain and swelling, but apparently not good for his eyes or skin.  Increases in his methotrexate turned him into Crazy Boy instead of my nice calm boy. Really not that bad, but I didn’t put two and two together until the optometrist mentioned something about his behavior. “I can see they increased the methotrexate!” LOL  OMG is *that* why he hasn’t been able to listen to me all week?  Mmmm, hmmmm, yup – this is just what he was like when he first went on it, and I had forgotten.  (Blocking out the trauma, LOL)

So we are being switched off of Enbrel to Humira (another TNF inhibitor with a different pathway).  Good news, we only have to inject that one once every two weeks. Bad news, it hurts like the seventh level of hell.  My son is already very sensitive and needle phobic.   I’m terrified of needing to do this to him.  It’s going to be ugly.  I’m so tired of ugly.  Luckily we have at least a week to wait because his shot is due today and we haven’t received the Humira yet, so we’ll give Enbrel.

One good thing is that since Humira should work on his eyes and skin, we can eventually *potentially* move off of the methotrexate, which is giving him awful stomach aches. Don’t get me started on the fact that his pediatrician and his rheumatologist disagree on what to give him for the stomach aches.  “Prevacid can’t possibly help”…yeah, well, it’s working, if even just psychologically, so imma keep him on it for awhile, M’Kay?  Unless you want to come hold him while he screams because his stomach hurts so bad doc, go right ahead. 😛

Rereading all this doesn’t sound like much, but the two together, on top of normal (i.e. difficult) life around here and just being “full up” all the time, I’m clinging to sanity by the thinnest of hairs.  I’m binge reading fiction just to keep my mind off things, while everything else falls apart all around me.  And then I leave the house and put on my usual fake smile for everyone so everyone thinks I’m doing so well.  But it’s like I’m actually about a foot outside of myself.  I can feel myself “leaving” – I can now turn it on at will.   But it’s exhausting. You’d think it would be easier, but it takes a lot of energy.

And I think it’s why I’m not grieving normally.  I’ve spent the last very many years being “outside myself” when with my parents because it was not safe to “be me,”  so there was no real relationship because I’m not really there. Some other girl is there.  Some happy, helpful, emotionally stable chick that morphs to be whatever you want if I can see you are not a safe harbor for me. Nope, definitely not me, LOL.

OK, I’m going to stop before I say something I’ll regret, insert a few random pictures that make me happy, and call it a day.  Thanks for reading.  I’m hoping now that I’ve gotten this off my chest I can go back to more normal posting because you’ll understand the backstory.

Love to you all.

9 thoughts on “Life Update

  1. I feel so much in common with you. If you need a fellow HSP friend to write to I’m here. My Grandma died this week and I also wondered if something was wrong with me in how I handle grief. I resonate with your fake self. It makes so much sense for me too.

    1. I’m so sorry to hear about your grandmother and your struggles in how you are handling it. I can definitely understand complicated grief. Can I use the email you provided when you commented?

  2. Sounds like you’ve been kneeling to pray A LOT recently. Giving it to God when I couldn’t go on anymore. I’ll send some prayers your way. ♡

    1. Well, my kneeling to pray has been more like screaming at the sky while I’m driving, but similar idea. 😉 Thank you for the prayers, Lisa. <3

  3. My daughter has JIA too! She has been on and off Methotrexate over the years and had uveitis. Right now she is in remission which we are so grateful for, but I totally get the stress and frustration of it all. My brother died unexpectedly in October and it’s been a complicated grieving process because of so much distance and family strain. Praying for you in this season..grace, peace and soul rest.

    1. Thank you Aimee. I’m so sorry to hear of your own troubles. Thankful that your daughter is in remission!! My son had a year long remission when he was 4 but has been struggling since then. We are hopeful that the Humira will help and I’d love to get him off the Methotrexate! 🙂 Praying for you and yours as well.

  4. Amy,

    My 12 yo has been struggling with uveitis since 2014 and it took Retisert implants to control it. Hers is idiopathic and doesn’t have an autoimmune or infectious process behind it . If you or your kiddo would like to commiserate about it, feel free to email me. Molly feels so alone in her experience with needles, medicine, feeling crummy and lots of doctor appts. That Humira was a beast! And Molly was on 1 mg folic acid to try and prevent the gastroenteritis that is a side effect of MT. It took that and Prilosec and a probiotic to help with the stomach pain. Eye drops are a pain to try and remember every 2 hours. I don’t think I ever had a day that I was successful. : I

    1. I’ve never heard of Retisert, I’ll have to keep a mental note of it. I should talk to my dr. about upping our folic acid because I’ve heard of many people taking more than we are. Thank you for your offer to commiserate, I really appreciate it! I’m sorry this sounds so disjointed, my 19 and 17yo DDs are bickering loudly in front of me, LOL. Positive thoughts and prayers for healing for your daughter!

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