July and August updates

 It’s been over two months since I posted an update so there is quite a bit to say. In my last update, Skye had just recently started Humira injections and was having some pretty bad side effects including chest pain and pressure, muscle aches all over, lethargy, a cough, etc. I brought this to her dr’s attention and was told that “none of ‘her’ kids, aka patients, had experienced those issues”. We made the decision to stick it out for a bit longer since we really weren’t sure if it was definitely the medication. We did not want to just jump from one med to another so quickly. 

Well, fast forward a bit and things continued to get much worse. Not only were her meds not helping and causing these same symptoms every time she got her injection, but her JIA symptoms were also continuing to increase. A new joint is now messed up (her wrist), other joints became worse and by the end of July she was unable to walk much at all but could use crutches to get around.

Alex and I both got sick with Covid in the middle of July and about a week into my Covid symptoms I ended up getting a terrible rash on my face as well. When it continued to get worse, I finally gave in and contacted my dr for steroids. It looked pretty bad but felt a lot worse than it looked! Still don’t know what it was from but it was probably some strange Covid symptom for me. You never know in this family. 

On to August!

August was a doozy for our family. Skye’s pain continued to get worse and she has now been living on the couch downstairs for the entire month of August because she can not get up the stairs to her room. By the 5th of the month we were getting increasingly concerned. She stopped talking, was barely eating and was telling us some pretty scary thoughts she was having. It was a new low for her and when nothing was helping, her pediatrician suggested we take her to the ED to see if they could provide any relief there. She ended up being admitted and transported downtown via ambulance and they kept her for 4 days. The huge positives to the hospital stay is that she was able to see a psychologist and psychiatrist there (our insurance doesn’t cover them outpatient) and the nurses and drs were able to see and document her reaction to Humira since she was due for that while admitted. 

A few days after she was discharged, we had a previously scheduled procedure which we decided to follow through with. She was supposed to be under sedation but unfortunately we found out the hard way that Skye does not respond appropriately to the medication she was given. She was not sedated nor did she experience any pain relief despite being given enough medication to knock out an adult man (her dr’s words). After the procedure was done, our girl was in such excruciating pain that her blood pressure was up to 168/144, heart rate was really high and though the medication did not sedate her, it did take away all of her inhibition in this awake and painful state. She screamed (and I mean SCREAMED) in pain, begged us to let her die, told us she’s “done” and can’t live like this anymore and in between all of that she started to pass out. She’d go from screaming bloody murder to her eyes rolling back in her head and instant silence at which point she would stop breathing and her Oxygen sats would drop to the low 70s. Alarms going crazy while the nurse and I did anything we could to rouse her so she’d breathe again. I am pretty sure that Alex and I held our own breath most of that afternoon as well. After about 30-45 seconds she’d gasp for a breath and go right back to screaming. It was startling each time it happened and she’d pop up like a Jack In The Box and make everyone in the room jump. This went on for a couple of hours and she passed out about 20 times over the course of that time. Thankfully she does not remember most of this but Alex and I were pretty traumatized - still are to be honest. 

The next day we had an appointment with her rheumatologist and made the decision to switch her biologic medication since she is now having a confirmed reaction to it and it was not helping anyway. We will also now be sent to a hematologist (this Thursday) to check her for my blood clotting disorder and to a geneticist to be tested to see which medications work and do NOT work for her. So more appointments and more specialists but it feels like over time we are finding more pieces to the puzzle to better see the bigger picture which is a good thing. 

As of right now, she is still living on the family room couch and is now strictly using a wheelchair to get around but she spends 98% of the time not moving at all. We have some dr appointments downtown this Thursday as well as her new medication starting this Friday. This time she will be receiving infusions at the Children’s hospital but she will only need to get them once a month. Everything takes time to know if it will work but we are really hoping this is “the one”. 

In other, really BIG news - I am almost 6 months seizure free and I will be able to drive this coming Saturday! I’m definitely looking forward to having that freedom back. Today is one year since my very first seizure so yesterday was a weird day for me. On one hand, it feels like I completely lost a year of my life and I’m grieving that but on the other hand, it feels like Alex and I should celebrate that we made it this far. It has been a really difficult year for so many reasons but WE MADE IT! Ironically, my mind is so overwhelmed with feelings about hitting this one year mark that I got less than 2 hours of sleep last night and lack of sleep is what triggers my seizures in the first place. That is really the main reason for this update, it helps to write things down to get them out of my head. We are far from “done” and Skye still has a long way to go but with me at least, I think I can possibly see the tiniest sliver of light at the end of the tunnel. 

In mid October I will have a CT to check to see if my back fusion is complete. If it is, my neurosurgeon will be scheduling my surgery to remove the metal cage and screws that have been holding me together, if it is not, we will have to re-check at a later time. We really need this fusion to be complete! The metal is screwing with me (ba dum tss 🥁) and it needs to go asap. 

Ok, I’ve gone on long enough. That is really the short version believe it or not! But I feel better after having written it out. 

Here’s to hoping for better days ahead and not giving up! ✌🏼

75 Days!!

     Just wanted to make a post to say that we are down to just 75 days until I can drive again! This is by far the longest I have gone without a seizure - on July 6th it will have been 4 months! I am looking forward to being able to drive again and I know everyone else in my house is too ☺️ 

    Colin and Skye went to my parents’ house this past week for a couple of days. They made gluten free donuts, went to a museum and Skye was able to do some crafts too which is her favorite. Alex and I were even able to go out on a lunch date which was much needed. Thanks mom and dad!

    Little Skye update - she is not doing well at all. She started her new medication about two weeks ago and experienced many unpleasant side effects. We are hoping they will get better as time goes on and she adjusts to the medication. She has also been complaining of her chest hurting for the past couple of weeks but that has continued to get worse and is now causing her to not sleep so we went in to see her pediatrician this afternoon. Breathing is extremely painful for her right now and because of this she is breathing very shallow which is making her dizzy. 

    She was diagnosed with Costochondritis which is inflammation in the cartilage around her sternum and rib joints. Not at all uncommon with JIA and thankfully not harmful but it is very painful. Her pediatrician is recommending that we talk to the Rheumatologist about increasing her steroid dose. We are on week 4 of her taper and he feels that we may need to slow the taper down until her biologic medication has time to start helping. He also RX some pain medication to help keep her more comfortable and rest in the mean time. Great news is that she finally was able to catch a little nap after her first dose. Not a long one but I was happy to see her resting! 

   

    She’s getting some hugs from Alex now. He can fix almost anything - wish he could fix this! But I know for a fact it will at least help her feel a little better ❤️ We are looking forward to this all being behind us. 

Summer!!!!

    Summer is here! We have successfully completed a full year of virtual school for Skye and are now done with elementary school altogether. Colin finished the year strong with all A/B honor roll and Skye finished with all A’s. We fell extremely behind this year with her because for most of the school year she was not able to go to sleep at night due to pain and then needed to catch up on sleep all day. I thought for sure we’d be doing school all the way through July but in early May she really pushed through and got caught up (and even a bit ahead!). Alex and I are so proud to see the progress she was able to make because we’ve seen the struggle up close. Next school year both Colin and Skye will be starting middle school - Colin will be in 7th grade and Skye will be in 6th. 

    In my last update I talked about Skye’s diagnosis of JIA-ERA and the fact that she was starting on a chemo medication called Methotrexate to treat it and hopefully slow down the damage being caused by the arthritis. Well, we gave that a go for a month but will now be switching to a different class of medication called biologics. It is typically more effective for the type of JIA she has and tends to have fewer full body side effects as well. It will require weekly injections that we will do at home and we are praying to see some improvements in her overall quality of life. We are currently in another waiting period because she needed updated liver function tests (which have shown a decline already since starting the methotrexate) and a TB test before we could start this new med. Those were done last week so the only thing we are waiting on now is insurance approval for the biologic (Humira). In the meantime she is also on steroids for a couple of months to try to bridge the gap and help keep the disease activity down.

    The great news is that her dr is starting her on the dose needed for her weight but there is room to increase it if needed. She said if after a few months we are “only” seeing 75% improvement in the way she’s feeling that we can increase it. 75% improvement sounds like a dream come true so to hear that her dr is hoping for even better than makes me so happy! 

    I am in double digits now to being able to drive again as long as I don’t have another seizure. 3 months down and 3 to go! This is the longest I have gone without a seizure since September - super thankful! I had to stop taking one of my medications for Lupus because my insurance refuses to pay for it and it would be $650 every month so I have had to be on steroids pretty frequently but the countdown is on to getting this metal removed so if steroids is what I need to take to get by then that is what I’ll do. Not ideal but also not any better options at the moment so it’s ok!

    Not much else to update - this weekend is dance recital so we’ve had two dress rehearsals and also photos taken in her costumes this week. Today and tomorrow Skye and I plan to lay low and recover before our busy day Saturday! A few weeks ago we weren’t sure she’d be able to do her dances but she is stubborn like her mama and going to just push through. It’s definitely going to be a bit emotional watching her on that stage.  

    Here are some of the pictures we took by our house last night. I won’t have her professional ones back for a little bit. 

For such a time as this…

     It has been exactly a month since my last entry so a lot has happened but I am going to try to keep this somewhat brief. First off, I am now 6 months post op from my spinal fusion surgery which is the halfway point to getting the metal taken out! I (Alex and I both) are definitely eager for surgery day to get here. We have so much going on in our family right now I don’t even know where to begin with these updates. I want to think that all of this is for some bigger purpose - maybe we will know one day and maybe not. But we just can not seem to catch a break and we definitely appreciate the prayers and encouragement we have been receiving along the way. 

    So I guess I’ll start with an update on me. Just recently I have started to notice an improvement in the my Lupus flares since starting an additional medication for it in January - it always takes these meds a few months to see if they will help or not. I still feel pretty awful most of the time compared to my “normal” but it is manageable so I will take it! The quantity of sleep I have been getting each night has also improved overall now that we have my pain under control. The past three nights have not been very good because of a current flare but I am hoping that it’ll improve soon on its own (without a run of steroids). Lack of sleep has been a major trigger for my seizures so it has been a top priority to sleep when I can. 

    Speaking of seizure activity, I had an appointment with my Neurologist a few weeks ago. I was hoping to get the all clear to start driving some since all of my recent seizures have happened while I was asleep in the middle of the night but I left that appointment very heartbroken. It’s my fault for getting my hopes up and I’m ok now, just needed time to process it. As of right now I do not have driving privileges until September 7th. If I have another seizure the 6 month “clock” will restart. My first one happened on September 3, 2023 so that’ll make it at least a full year. It is definitely inconvenient but has been very helpful to have a driving teenager. I also found out that day that not only do I have deficits in my left leg reflexes but also in all of the reflexes of my left arm so I was a bit surprised when I found that out. I really haven’t noticed anything being off with my arm though so I’m not going to stress over it. 

    I also gave in and went to the Orthotic Clinic to be fitted for an AFO that was ordered for me back in December. I was stubborn and kept telling myself that my foot drop would go away but it has not. I finally got tired of tripping. Let me just admit that I wish I had not been so stubborn! It is a bit clunky and definitely not cute but I can walk much more safely now and for much longer distances. Game changer! Will I learn my lesson about being stubborn? I’d like to say yes but even I know that wouldn’t be the full truth. But I am trying! 

    Next we have Aidan. Not much to update there though. Right now he’s my “boring” child which is a good thing lol. He’s doing great in school and at work and has been a huge help with taking us to appointments when needed and picking up groceries. I’m so thankful for him!

    Colin. Oh boy, where to start. He has had migraines since he was a toddler but they were manageable and typically only once a month on average. Same routine every time - starts up with the migraine and dizziness, he throws up at least once and then sleeps it off with an ice pack in a dark room after we treat him. Not this past month though. His recent migraines are taking days to resolve and cause him to throw up multiple times in a row. He missed at least half of the school days in April because of this. We have tried many natural methods as well as prescriptions. Next week he has a brain MRI to make sure there are no physical causes and we have Neurology appointment set for him in July. 

    Next we have Skye. She had a minor surgical procedure last week that thankfully ruled out Sjogrens Disease for now but we are still awaiting some other tests to check for Crohn’s and IBD. She still could develop Sjogrens or other autoimmune diseases over time so she will be closely followed by several different specialists but hopefully will not. JIA and Ehlers Danlos are plenty in my opinion! 

    She has officially been diagnosed with Juvenile Idiopathic Arthritis (Enthesitis-Related Arthritis is her specific subtype). She has some significant damage in her left ankle but thankfully we caught it before it made its way to her bones so the damage seen on her MRI should be reversible with treatment. Yesterday we had an appointment with her Rheumatologist to discuss treatment options and we will pick those meds up and start them today. Please pray that her side effects are not too bad and that she will start to experience some relief! She will be on a steroid taper for a while to help with her inflammation/pain and she is also starting Methotrexate which is a Chemotherapy drug (low doses are typically a first line of defense for JIA and many other autoimmune conditions. I am on this for my Lupus as well). We will not know for about 4 months if the Methotrexate is working or not. 

    While this is a lot to take in and process, it is also not a big surprise as this is what her symptoms have been pointing to for a while. It just takes time to develop enough in kids to be seen on imaging. Referring back to my earlier statement, maybe being diagnosed with Lupus and being placed on these same medications myself is all part of a bigger purpose for such a time as this. It would be much more scary to find out my baby is being placed on these medications if I did not have the knowledge and experience with them that I do. It is still scary of course and the side effects can be rough but we at least feel as prepared as we can be moving on to these next steps with her. 

    Only one left is Alex! Not much to say except that, as always, he is our rock. Somehow he is able to not only keep up with the craziness of our life, his full time job, the house, and helping others when asked but he does it with more patience than I have ever seen in a human being. And he also manages to keep us laughing through it all. 

Keep moving forward!

    It has been a busy month but we are still kickin’! 

    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

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.

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

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. 

    

No rainbows or butterflies…

If you want to read only positive posts then this isn’t the one for you and that’s ok! Just keeping it real. Right now our life is not full of rainbows and butterflies. More like rain clouds and vultures or something, I don’t know. Just don’t say I didn’t warn you! Several people have told me that they appreciate the updates on here but more than anything I am posting for myself. It helps me to write out and process my thoughts. 

My last update was mid-January but it feels like so much has happened since then. January has got to be the longest month of the year, am I right?! I spent most of the month in a flare, spent about half of the month on steroids, caught the Flu which was absolutely horrible and had some other really big things happen in our lives. Not sure why everything hits at once but boy oh boy, it sure does. 

 I had my 12 week post op appointment for my back and that went well. Everything is still in place and healing on schedule from what they can see on the x-ray. We also have a plan going forward due to my reaction to the metal that will ultimately result in me needing another surgery to remove as much hardware as they can. This can not be done until at least 12 months post-op to allow the spinal fusion to be complete though so for now we focus on managing my symptoms as much as we can until then. In November I will have a CT Scan and if the fusion is complete we will schedule surgery. If it is not ready yet then we will recheck about 3 months after that. 

Colin hurt his knee a few weeks ago. It collapsed while he was running and he's having a bit of a hard time getting around now and experiencing a lot of pain. We went to see a pediatric orthopedic dr and had some x-rays taken and they ordered an MRI which will be done next Tuesday. For now he is in a brace because without it his knee gives out on him often. The good news? Well, as usual we have met our individual AND family insurance deductible for the year already. It's fine. Everything is fine. 🔥

Alex had to go back to work on site full time for the first time in almost 4 years. We are SO thankful for the time he had to work at home - especially in the last several months since I became so sick but it has been a tough transition not having him here. It’s not like I needed him to do much for me or anything like that but just the fact that I knew he was here watching over me was comforting. I had been with him literally every single day since my seizures started on September 3rd. He’s my rock and my best friend and I miss him! This is the least of the things that happened in January and I know I’ll adjust but it was just kind of the cherry on top so to speak. 

We had a tragedy in our family in January as well but it isn't my news to share so I won't be posting that but it has just been a really heavy month. A lot of tears and no understanding of why such bad things happen sometimes. I am sure I have cried more in the past two weeks than I have in the past year. I am so tired of crying! 

I am thankful for the friends that have reached in when I haven't been able to reach out. I know that I am not fun to be around right now and I'll be the first to admit it - just call me Eeyore 🙃 I find myself avoiding any social situations because of this and because I just haven't been feeling well at all but through all of this I have realized even more just how amazing my friends are! 

We do have some positives to note as well so I don't want to skip over those even though they are somewhat "in progress". Skye's Rheumatologist and ENT had ordered some tests and procedures but I've been calling and playing phone tag with the various offices for months trying to get them scheduled. I was finally able to get a couple of them on the calendar (in April but better than nothing!). She is not doing well right now either so this is a big deal! Hoping to be able to help her in some way, somehow. I don't like seeing my girl suffer so much. Also, my dr started me on a new medication that is supposed calm down my immune response. Right now my body is in attack mode against this metal causing the continuous Lupus flare that I am in. We are hoping that will improve things some and at least get me to a place where I can be a functioning human. Right now I am not. We really won't know for a few months but hoping it helps. 

We also got to celebrate Colin’s birthday, both of my nieces’ birthdays and my sister’s birthday in January! Feeling extra thankful for family this past year! 😊

She seriously does not know how big she is. Who needs a weighted blanket?!? Not us!

 That's the update for now pretty much. Next week is really busy so I'm sure it'll be a bit before I post again and I didn't want to get too behind. As always, prayers, good thoughts, good vibes, and good jokes are appreciated.

Holiday updates

 I haven’t made a post in a while because the holidays were busy and I really haven’t been in a very good headspace but I have waited long enough so here goes nothing! December is always a really busy month in our family with birthdays and Christmas and stuff but all of that went well and we had some good family time.  

My lap Dane!

Let’s see, here are some of the positives: 

1. Not only did I completely ditch using my walker in December but about halfway through the month I was also able to transition from my aircast to a soft brace for my sprained ankle. 

2. I went to the gym a few times the week before Christmas and I was able to spend some time on the Assault bike. The bike is better for me than walking because I am still dealing with drop foot and I trip on my own foot a lot. I struggle with limiting myself though and realized after the 3rd day of riding the bike in a row that I probably need to pace myself a bit better. This is my biggest struggle because my brain remembers what I used to be able to do in the gym but my body just isn’t ready yet. 2023 was the year of PATIENCE! 

3. I went the whole month of December without any seizures!

4. I am able to move around better with less assistance and am able to do more things around the house. I even was able to go on an easy hike in North Carolina without any falls!

5. We were able to go on a mountain vacation with a lot of my family the week after Christmas and that was a lot of fun. Colin and Skye actually played really well together all week and their favorite thing was climbing on rocks and hiking. We have talked about taking a trip like this for years and this is the first time we actually did it. Best Christmas gift from my parents ever for sure! 

Top of Chimney Rock

Those are the really big things and as I write it out I am very thankful but I am also really struggling. It may seem strange that I am experiencing both feelings simultaneously but nevertheless, I am. As I learned after my first wrist surgery back in 2021, my body does not react well to having metal hardware which is why I had it removed from my wrist but there was no choice in the matter. My back had to be fixed and that required more hardware. That being said, I have been in a pretty continuous Lupus flare since about two weeks after surgery. This means almost daily fevers, all over body pain/joint pain, chills, exhaustion, a frequently flushed face and just feeling unwell in general. Steroids do help the flares but it is only temporary so I limit those as much as possible. I am working to control my diet and eat as clean as possible since that is one area I can control and it does make a difference. As I am able to workout more I will definitely work to increase that as well. I just need to remember to pace myself! 

I try really hard to look on the bright side and most days I can but over time it gets really exhausting. I’m tired! Physically, mentally, all of it. I’m not a quitter though and I’m not going to start now so I’ll keep on pushing through it, even if it is painfully slow. It does help to look back and see how far I have come though and my back is so much better than it was before surgery. 

This is what my Lupus flare fevers typically look like

Lupus “Butterfly rash” - thankfully it isn’t like this all the time but it usually gets worse when in a flare. 

Charli always seems to know when Skye and I are not feeling well. The BEST pup!

Skye is in a flare right now too so Charli shared the love with her yesterday

I was really looking forward to putting last year behind me and starting 2024 fresh but unfortunately my year started with another seizure on 1/1/24. I really thought I was in the clear because I made it exactly 2 months without having one. Talk about a huge let down!! It did help provide some answers about why I am likely having them though which is a good thing and we are doing everything we can to hopefully prevent more from happening.

Those are my updates for now. I start PT for my back and drop foot soon so I am looking forward to that since it is progress forward!