I have a lot on my mind lately, and this is a “dump it all out” type of post. So here goes…
I have to go have an MRI done on my head tomorrow (the 27th). As I’m getting better at describing exactly what’s going on with my loss of fine motor control and neurological issues they think it might be central-nervous system related now (especially after the EMG/NCS showed normal results). So now I have an MRI scheduled to make sure that I don’t have lesions on the white matter of my brain. Just the thought of lesions on any part of my brain is utterly terrifying. But it’s actually one of the ways that my disease can manifest and it would tie in with my neurological issues and even the brain fog that I have going on. And of course after the MRI I won’t hear anything for a while until doctors pass along the info to each other. My next appointment with the KU Med rheumatologist isn’t until Feb 20th because he wanted to give me a chance to have an appt with a neurologist and for him to receive the info from that appt.
And to make matter worse, my MRI is at 7am and it’s over an hour away. I’m NOT a morning person and this is going to make me quite cranky!
At my last rheumatologist appointment they noticed that I have broken blood vessels around the cuticles of my nails – they can only see it with the lit magnifier and no one has bothered to look there with it before. So along with other blood work they sent out for that day was bloodwork looking for sclerodema…just what I need, a possible overlap of another disease.
I have a nodule that has popped up on my left wrist (after my last visit to the rheumatologist last Friday so I couldn’t talk to him about it – it will have to wait until Feb to discuss it). It’s the wrist that hurts the most and has loss of motion and other issues due to my autoimmune issues. Subcutaneous nodules are fairly common (sometimes called rheumatoid nodules) in rheumatoid arthritis (which I had been diagnosed with for 2 years but no longer am) but I can’t find much info on them for patient’s with primary Sjogren’s…so who knows what THIS means for my musical diagnoses. It hurts, looks weird and is just one more thing that’s going on with my body…I can’t seem to stay stable for very long…always something new happening to have to process and deal with.
My kids left for Christmas with their dad yesterday at noon. We switch each year – and this year was my year to have them from when school got out until noon on Christmas and then again from the night of the 30th until they go back to school. The good part of having this shift is that you get them for longer time. The bad part is that they leave at noon on Christmas and the day always seems a little less happy after they leave. I prefer to sleep in, pick them up at noon and have them the rest of the day! 🙂
This year seemed to be especially hard for me to have this schedule as my daughter was a little upset in the morning when she was with me. She’s been wanting a small pet (hamster or rabbit) for several years and this year decided that it would be the “only” thing she wanted from Santa. We’ve had many discussions over the years that Santa only brings presents that the parents approve of and how we have two small indoor dogs that would probably not get along well with a rodent or rabbit. We’ve talked about the mess, the fact that she doesn’t have room in her room, about the nocturnal nature of the animals and how she’s gone to her dad’s sometimes and it would become my responsibility to take care of the pet for her.
We’ve gone over these reasons for years about why she can’t have one. So I assumed she’d be prepared for a lack of a small pet from Santa. But she was still very disappointed. And it was made worse by the fact that two of her friends received bunnies and thanks to facetime and imessage, she found out about them not long after realizing that she didn’t get one herself. She acknowledged that she likes the things we got her, and is grateful for what she did receive…she’s just sad that she didn’t get the hamster or rabbit that she desperately wanted. So she basically spent the morning in her room, sad, and not very social.
I already have such issues with the fact that I’m letting this struggle with disease interfere with the kind of parent I can be, want to be and should be – that I don’t play as much, that I have to focus on myself so much more than I’d like. And I have these new struggles of needing an MRI and possible other overlap disease going on that are fresh (less than a week). So I’m a little over-emotional these days and have a lot of guilt and fear over the type of parent I’m being while sick. So I think this Christmas morning sadness just pushed me over the edge. It was heart-breaking for me. I still stand behind my decision that we most definitely do not need a little furry pet. I definitely don’t want to give in and get her one now – I want her to know that she can’t just pout about something and get her way. It’s OK for her to be sad or disappointed and to express those feelings, it’s a part of dealing with life, but it definitely doesn’t mean that I now magically change my mind and she gets it. So I still think it was the right decision, but she walked out of the door sad and now is gone for 5 days. I can’t hold her and snuggle her and play with her with all the things she did get. I know she’ll get over it – she’s 8 and she has so many fun things to do in life…and maybe it’s that I want to snuggle with her for my own benefit – to make myself feel better about what’s going on with me. But it just made Christmas not quite as Christmas-y as it usually is with my kids to have it be like this.
I just got an iMessage from her that says (corrected for her 8 year old spelling!): “I won’t ask for a hamster or a bunny because I can’t win the battle. It was my dream to have a hamster or a bunny when I was a kid but it will never come, so I will never ask you again because my dream is crushed.” Oh, Good Lord, the amount of heartbreak an 8-year-old can cause!
And my brother’s dog is not doing well. We’re a family of dog people and their dog, The Dude, has been a part of his (and by extension, our) life for a long time. They spent the day yesterday with him at the emergency vet. Just one more way Christmas wasn’t exactly as great as usual this year. They live in Michigan, so we aren’t near them to be directly impacted by these events, but it’s still my brother and his dog and it still just one more “ugh, this sucks” things to add to the list.
I have to say that it’s been a rough week all around…and the next two months of MRI, neurologist appt (Jan 13th) and waiting to hear about all the results until my next rheumatologist appointe (Feb 20th) doesn’t appear to be that much better.
8 thoughts on “A lot on my mind…”
I’m so sorry! I hope that the indoor dogs you have were at least willing/able to snuggle you some. I hear you re: diagnosis woes. Each symptom that pops up makes me hopeful that this will be the last piece in the puzzle doctors need to diagnose me with a treatable disease/syndrome. Instead, I just keep accumulating additional diagnoses and ineffective medications. I hope that they get to the root of what you’re going through, so you can have answers, but also that they figure out how to make some of your symptoms go away! Last, I hope your New Years is better than your Christmas was.
Yep, the puppies are smugglers! 🙂
I think they actually enjoy my exhaustion and frequent napping!
You expressed it wonderfully…hoping each new symptom will lead to a definitive understanding and plan but it just keeps adding to the tangled mess!
Your post made me feel weepy too even though my days of disappointing my children are past. Primary Sjogren’s can be a hard to deal with. One of my best friends is dealing with it. In her case she had a revelation lately. She was getting worse, and sleeping badly. When she went for a sleep test they found she was waking over 100 times per hour. Now that she has a CPAP machine she is at least sleeping.
I hope you get some information from the MRI. At least that helps to make it feel worth it. I was hoping plaquenil would help with my sjogren’s but it gave me gastro symptoms. Since I did not want to deal with them over the holiday I thought I’d try it again when it’s quiet
I waited to start a new drug until after my wedding because I didn’t want yucky side effects during my wedding! It’s crazy how we have to do that because so many of these drugs can have suck yucky side effects 🙂
Here’s hoping your MRI went well, that they do not find any brain lesions, and that your docs find successful treatments for your symptoms that also manage to slow disease progression waaay down–whatever the diagnoses and prognoses du jour.
Also–that your daughter’s father helps her deal with disappointment responsibly, and you and your children are able to enjoy each other and your animals when they return.
Thank you for the wonderful wishes! They are much appreciated! 🙂
My partner has SJ and she has been struggling and I would like her to talk with people who have SJ. She is deaf…. I want to support her with everything and I would like to learn and to improve me understand better instead of being frustrated.
Her health insurance is not a great. Any suggestion….