I know my last post was pretty negative which is really not the mindset that I usually have and definitely not the one I want to have. I have been on the struggle bus for a long time. It feels like my life has been somewhat frozen since September 3rd and it has been getting the best of me - I’m working on it! That is actually one of the reasons I haven’t updated in a while. I was dealing with a severe lack of sleep again due to pain and the combination of the two was keeping me in a really dark place.
It finally feels like we have taken some small steps forward so I wanted to share that and give an update as well. I had another seizure a few weeks ago - it wasn’t a big surprise because I had some signs leading up to it but still disappointing and frustrating. Within a few days of my seizure I gave in and called my dr to schedule an appointment to try to figure out ways to help me sleep more. They got me in pretty quickly and we have a plan going forward to help with my pain and inflammation. Since that appointment my sleep has increased some and with that came the first glimmer of hope that I’ve had in a while. Some nights I get as much as 5-6 hours and then I have nights like last night that I get maybe an hour and that’s it. I was at regular 1-2 hours per night though so this is a big improvement. We will take it and are very thankful.
I have been making a list of small goals I’d like to accomplish each day and that has been helping me a lot. I do have days that I am too sick to get it all done but most of the time I have been able to! It isn’t anything that would have impressed my former self but I’ve had to change my perspective over these past 7 months and I know how important these daily wins are so I plan to continue to do this. I have been encouraging Skye to do the same also.
We have had a lot of important appointments recently with more on the way - I had my appointment last night to get hooked up for my 72 hour EEG that was ordered by my Neurologist all the way back in September. So grateful to finally get this done! I look hilarious and according to my family I look like a pilot (Alex), Spider-Man (Aidan), Thanos (Colin), and Turboman from the Christmas movie (Skye). Today I get to go to the children’s hospital with it on so if you see me out today with a beanie on my head even though its 85 degrees just mind your business. Have to cover this thing up at least a little. 😂 Skye wants me there though so I’ll go for her.
Speaking of Skye, she’s really been through it lately too. Her health has continued to decline and we are hoping to find something to help her soon. It’s so hard to see your kids go through something like this and not be able to fix it. She has constant pain, has drastically fallen off of the growth chart over the past year and she wants to sleep all of the time so she had some labs done for these things and today she will have her third MRI in a week. When all of this started she would cry at the thought of any blood work or IV’s and at this point she just watches them while they do it. No more tears! I am proud of her but also sad that it has gotten to this point that shes so used to it. Praying and hoping for some answers!! We see her Rheumatologist on Friday.
That’s all I’ve got for now. I’m in a Lupus flare and it is hard to type. Here are some pictures of the past month and a half. Trying to focus on the bright spots because they are there if we look for them 😉
A friend bought Skye these adorable boots and that inspired her to get dressed and fix her hair and stuff. Made me so happy! We also celebrated Maia’s birthday at the end of February.
Some cousin love that we were able to enjoy with some perfect Spring weather
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| Aidan is buying the S2000 back from my parents and he’s so excited. We first bought that car when he was only 1 year old so it has a lot of sentimental value to us. I had to do comparison pictures of course. |
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| I love that Alex involves the boys in doing maintenance on the cars and stuff. His dad taught him and now he gets to pass that on to our kids! |
Dog park day and a sunset picture I took on one of the walks Skye and I took together
No one gets to see what this thing looks like underneath the beanie besides family and 2 other people. I’m glad it’s added some laughter to the house I suppose
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| This one is a big deal to me. I was able to close my rings on my watch almost every day in March! Closing my rings used to be a given but is no longer something I will take for granted. The 5th was the day of my seizure so you can kind of see the downfall leading up to that and the 31st (Easter Sunday) I felt absolutely awful and really couldn’t function at all. |
