Tufts! - a medical update
Many have asked how I am doing with the meningitis recovery and the lupus stuff, so here's a medical update for ya!
Many of you saw my pics a bit ago on social media. The below is the latest - they are outta control! :-).
As my post said, I lost a lot of hair during the Cytoxan treatment I went through to stop my lupus from attacking my central nervous system (CNS). It took awhile for it to start growing back, but it's coming in now, curly! I had my last chemo treatment in February. Shortly after, I started on another, much less harsh, treatment called Rituxan - it's administered every 4 months via two IV infusions about a week apart. I also started on Imuran (I take this daily). Both of these meds are chemo meds, but I get them at much lower doses. They suppress my immune system to keep it from attacking me. And I've been responding really well to the combo - my joint pain and fatigue have improved SO much!
The meningitis recovery is taking SO much longer than anyone anticipated. Again we *think* it was triggered or aggravated by my lupus, so the recovery has been much different than just a regular recovery from a viral/aseptic meningitis (and I know this because I actually had viral meningitis when I was 16!). My head and neck pain are MUCH improved and my pain management doc and I are working to reduce the heavy meds I am on and it's been going okay (my body doesn't handle changes well, changes flare up my lupus so we're having to balance things).
My mental focus and capability are continuing to return. I still struggle with holding multiple pieces of info in my head and putting them together. Like doing mental math. Or making sense of someone telling me a plan or instructions. I often have folks say "oh, well I have trouble with that too" and the difference is, I didn't use to...I was trained to be able to look at lots of data and pull together a story (and backups to that story :-) ), so it's been an adjustment to feel like my brain isn't working right. I also have what we call "brain stutters" - it's when I know what I want to say, but I can't get it to come out, or come out correctly (sometimes I'll just blurt out words that have NOTHING to do with the situation). This has gotten SO much better and usually only happens now when I'm tired or upset or have a lot of inputs coming in (restaurants that are too loud or busy, multiple conversations going on around me, etc). My head will get tired/start hurting after watching a movie that's "busy" or after reading for too long, so I've learned to work with those limits. I've been playing a game on my phone that deals with patterns and strategy and I've found it's helped a ton when it comes to looking for things on shelves, scanning traffic, etc. I used to get so tired and confused trying to find things on the shelves of grocery stores, or even just trying to find lost keys in the house. That fatigue doesn't happen very often anymore...yay! And I've improved enough to where I was able to help my church with logistics and organizing help during Harvey. There is no way I could have done that 2 months ago. Progress people.
Physically, I am starting to both look and feel more myself. I actually gained 44 pounds from the steroids and I'll just say it was a painful struggle to process how much my body changed. As I've come off meds (specifically the steroids), my heart rate (which was 123 RESTING) has totally returned to normal, so physical activity isn't as frustrating (that moment when you want to exercise but after 5 minutes your heart rate is almost 200...). I started swimming again back in April and it's been slow, but I've been able to lose 20lbs (throughout all of this, I've maintained my clean-eating, gluten-free/dairy free diet, so really not many changes in eating habits, just getting off the meds and getting back to exercise). It's been SO nice to be able to do some camping trips and travel and be able to handle it. I look forward to when I am not just "handling it" but just doing it, you know? Just another PSA- but don't take your health for granted. Use what you've been given and enjoy it and be thankful.
SO MUCH PROGRESS!!!
If you would have told me a year ago, I'd still be working to recover and stabilize, well, I would have cried. I think when faced with scary things, it's so important to take things one day at a time. I can tell you my biggest doubt and fear moments come when I get ahead of God. His mercies are new every morning, the bible says that (Lamentations 3:22-23)...that means, take it one day at a time. He knows us and how we will freak out if we try and figure out the whole path ahead. We can't see what progress we will make, what healing will happen, but He does. So rather than try and think and ponder and imagine, I continually work to let Him be God, not me, and instead focus on doing what He wants me to do each day - seek to love and honor Him in all that I do.
So the forward medical plan for me is to continue on the Rituxan and Imuran. And continue to reduce the meds I started after the meningitis (and we're close!). The only way to check to see if the lupus is still impacting my CNS is to do spinal taps (lumbar puncture - they take out some cerebrospinal fluid to check it), and they don't just randomly check your CSF (Thank GOD!), so my doc says we just watch for symptoms. I'm hoping the lupus just leaves my brain alone now and so far, there are no other indications.
As with all auto-immune diseases, the goal is stabilizing the disease so that you go into remission. Each slight improvement increases quality of life and therefore, every step forward is good, appreciated, and not taken for granted!
There you go - medical update. It's a lot of GOOD, isn't it? You'll notice that I didn't touch on the emotional/spiritual aspects of progress because that's a whole lot messier and part of the other blog posts that are coming that I mentioned awhile ago. :-)
Thank you all for continuing to stick with us and pray for us and encourage us. And it's definitely "us" - Jim has been the most supportive, gracious, patient, and loving husband through all of this and it has NOT been easy on him either. It's been really neat to see how God has grown him as a caregiver, in empathy and compassion, and I've relied on his "at the end of the day, our goal is to look more like Jesus, that's it" statement so many times to help me not worry about the future and take things one day at a time. Jim truly is my best friend.
Many of you saw my pics a bit ago on social media. The below is the latest - they are outta control! :-).
As my post said, I lost a lot of hair during the Cytoxan treatment I went through to stop my lupus from attacking my central nervous system (CNS). It took awhile for it to start growing back, but it's coming in now, curly! I had my last chemo treatment in February. Shortly after, I started on another, much less harsh, treatment called Rituxan - it's administered every 4 months via two IV infusions about a week apart. I also started on Imuran (I take this daily). Both of these meds are chemo meds, but I get them at much lower doses. They suppress my immune system to keep it from attacking me. And I've been responding really well to the combo - my joint pain and fatigue have improved SO much!
The meningitis recovery is taking SO much longer than anyone anticipated. Again we *think* it was triggered or aggravated by my lupus, so the recovery has been much different than just a regular recovery from a viral/aseptic meningitis (and I know this because I actually had viral meningitis when I was 16!). My head and neck pain are MUCH improved and my pain management doc and I are working to reduce the heavy meds I am on and it's been going okay (my body doesn't handle changes well, changes flare up my lupus so we're having to balance things).
My mental focus and capability are continuing to return. I still struggle with holding multiple pieces of info in my head and putting them together. Like doing mental math. Or making sense of someone telling me a plan or instructions. I often have folks say "oh, well I have trouble with that too" and the difference is, I didn't use to...I was trained to be able to look at lots of data and pull together a story (and backups to that story :-) ), so it's been an adjustment to feel like my brain isn't working right. I also have what we call "brain stutters" - it's when I know what I want to say, but I can't get it to come out, or come out correctly (sometimes I'll just blurt out words that have NOTHING to do with the situation). This has gotten SO much better and usually only happens now when I'm tired or upset or have a lot of inputs coming in (restaurants that are too loud or busy, multiple conversations going on around me, etc). My head will get tired/start hurting after watching a movie that's "busy" or after reading for too long, so I've learned to work with those limits. I've been playing a game on my phone that deals with patterns and strategy and I've found it's helped a ton when it comes to looking for things on shelves, scanning traffic, etc. I used to get so tired and confused trying to find things on the shelves of grocery stores, or even just trying to find lost keys in the house. That fatigue doesn't happen very often anymore...yay! And I've improved enough to where I was able to help my church with logistics and organizing help during Harvey. There is no way I could have done that 2 months ago. Progress people.
Physically, I am starting to both look and feel more myself. I actually gained 44 pounds from the steroids and I'll just say it was a painful struggle to process how much my body changed. As I've come off meds (specifically the steroids), my heart rate (which was 123 RESTING) has totally returned to normal, so physical activity isn't as frustrating (that moment when you want to exercise but after 5 minutes your heart rate is almost 200...). I started swimming again back in April and it's been slow, but I've been able to lose 20lbs (throughout all of this, I've maintained my clean-eating, gluten-free/dairy free diet, so really not many changes in eating habits, just getting off the meds and getting back to exercise). It's been SO nice to be able to do some camping trips and travel and be able to handle it. I look forward to when I am not just "handling it" but just doing it, you know? Just another PSA- but don't take your health for granted. Use what you've been given and enjoy it and be thankful.
SO MUCH PROGRESS!!!
If you would have told me a year ago, I'd still be working to recover and stabilize, well, I would have cried. I think when faced with scary things, it's so important to take things one day at a time. I can tell you my biggest doubt and fear moments come when I get ahead of God. His mercies are new every morning, the bible says that (Lamentations 3:22-23)...that means, take it one day at a time. He knows us and how we will freak out if we try and figure out the whole path ahead. We can't see what progress we will make, what healing will happen, but He does. So rather than try and think and ponder and imagine, I continually work to let Him be God, not me, and instead focus on doing what He wants me to do each day - seek to love and honor Him in all that I do.
So the forward medical plan for me is to continue on the Rituxan and Imuran. And continue to reduce the meds I started after the meningitis (and we're close!). The only way to check to see if the lupus is still impacting my CNS is to do spinal taps (lumbar puncture - they take out some cerebrospinal fluid to check it), and they don't just randomly check your CSF (Thank GOD!), so my doc says we just watch for symptoms. I'm hoping the lupus just leaves my brain alone now and so far, there are no other indications.
As with all auto-immune diseases, the goal is stabilizing the disease so that you go into remission. Each slight improvement increases quality of life and therefore, every step forward is good, appreciated, and not taken for granted!
There you go - medical update. It's a lot of GOOD, isn't it? You'll notice that I didn't touch on the emotional/spiritual aspects of progress because that's a whole lot messier and part of the other blog posts that are coming that I mentioned awhile ago. :-)
Thank you all for continuing to stick with us and pray for us and encourage us. And it's definitely "us" - Jim has been the most supportive, gracious, patient, and loving husband through all of this and it has NOT been easy on him either. It's been really neat to see how God has grown him as a caregiver, in empathy and compassion, and I've relied on his "at the end of the day, our goal is to look more like Jesus, that's it" statement so many times to help me not worry about the future and take things one day at a time. Jim truly is my best friend.
