47. Spring 2025 Update:

Beginning my sixth year of writing my health blog!

I've come a long way, baby!!

Even though I'll be sharing some of the struggles I've been having lately, every one of them has been a blessing in some way. There isn't a day that goes by that I don't meet a fabulous person in one of my support groups that I can connect with! I'm so grateful for all of the opportunities I've had over the years to meet other amazing health warriors and zebras!

Seems as though I've been either too busy or too tired to write as much as I was before. I write because I want to update the people who know and love me and also to give hope to anyone out there who's just starting their journey or perhaps needs a pick-me-up or just to know there's someone else out there who is struggling with these things too!

2024 brought with it so many new challenges for me. I feel like all I did for an entire year was go to appointments or take family members to appointments! The rest of the time, I was deep into reading clinical journals. Yeah, look at me geek out on that stuff, for funsies! Lol!

Through it all, I came away with some updates:

My PTH continues to climb, even though my calcium remains in the normal range. I continue to have incredible bone and joint pain, as well as muscle weakness. I’ve shown a decrease in my bone density as well. They almost forgot to do the wrist in my bone density scan, which is very important when looking at hyperparathyroidism. Aside from the normal calcium, I’m a poster child for someone with hyperparathyroidism. I was told that until my calcium goes up, there is no point in doing surgery. So, in the meantime, they’ve diagnosed me with fibromyalgia and GERD, and I’m supposed to sort out how to deal with the pain on my own (unless I want to go on pharmaceuticals, but I will decline those as long as possible).

I’ve had ongoing pain in my feet and, luckily for me, also have a nasty heel spur that’s not helping me walk. I know that I’m supposed to be exercising and walking and stuff to try to help with this, but the pain and post recovery are too much to bear at times. When I do anything, it takes me days to recover.

To deal with all of this, these are the following things I’ve done:

• I have a special bed that is elevated to help with the acid that aspirates into my lungs while I’m sleeping. Just a slight increase has helped dramatically. Before this, I was waking up coughing stomach acid out of my lungs. My gastrin is elevated, but I’m told it isn’t high enough to suspect a gastrinoma. High levels of PTH can cause this GERD problem as well as a gastrinoma!

• I’ve been going for myofascial massage.

• I have a hot bath with a cup of Epsom salts as often as I can before bed.

• I take liquid liposomal magnesium as well.

• I've been using castor oil like crazy! That is amazing stuff. I put it on my abdomen at night with a special wrap (benefits include helping open the bile duct and liver detoxification as well as helping with pain). I also put it on my face and neck and any other place I feel pain or have blemishes.

• I don’t dry brush as I find it too harsh on my skin, but I do use a brush in the shower with castor oil to move the lymph as well.

• I have a sauna blanket that I love because I can lay it on my bed, climb inside, and relax to a good audible book while reaping the benefits of heat therapy.

• I’ve been continuing to take LDN and CBD, as I’ve written about previously in my blog.

• I just bought myself a vibration plate. The idea is that the vibration will help move lymph and act like a passive form of exercise. I plan to, at minimum, use it under my feet when I’m sitting. People are raving about them, saying they can help with pain and post-recovery. I can't wait to try it.

• Rebounding is also a great way to move lymph and get exercise!

• The thing on my wish list and my most coveted item is a PEMF system. I can’t believe how expensive these things are. I paid privately to use one at a doctor's clinic in the city, and I felt like I had much less overall pain for a few hours! The clinical studies that I’ve read also talk about how this can increase bone density, not to mention other claims about helping with cancer. This thing is very intriguing, and I’m certainly working towards having access to one.

• Now that spring is here, I want to get out in the sunshine as much as possible! I should write another post about this cool wearable I've been using that helps me sort out my circadian rhythm. It's insightful and helps me measure the amount of vitamin D I receive from the sun as well as a myriad of other amazing health parameters!! The vitamin D from the sun is extremely beneficial for not only mood and body function and reducing inflammation but also hormone regulation, and I'm going to try to use it to bring down my PTH level!

Many of these same things that I do for pain management also help with detoxification.

I have an update about my lymph nodes too, so between that and not having a spleen, I’ve been keenly interested in lymphatic health and detoxing!

I’ve been having issues with my thyroid for a while now.

Although my blood work is always "perfect", I have 5 nodules in my thyroid. One of them grew very fast, and I had to have it biopsied. I was really scared of getting this done because the last time was a painful experience. This time, the doctor was excellent and helped me to relax.

He got the tissue, and the pathology came back benign! What a fricken relief!

I’m still struggling with fatigue like crazy. The good thing is that my hair stopped falling out! I think that was happening because my iron/ferritin levels got extremely low for a bit there. So I have a different hairdo now that I love, going from very long brunette to shorter blond, although I still do a double take in the mirror lol!

I was just struggling to keep my iron levels up as well, but over time I’ve been concentrating on eating red meat (mostly venison) as well as taking the supportive nutrients like B vitamins, magnesium, and eating lots of things with vitamin C. I’ve been also been using cast iron and filtering the fluoride and other baddies out of the water with a stainless steel gravity-fed filter system. I’ve only taken my iron supplements a few times over the past few months, but I’m happy to say that my ferritin is now just above 70!! That’s an incredibly impressive feat, I’m told!

So, other than all of that stuff that’s causing me some grief, I’ve been trying to manage the full-blown diabetes that’s kind of taken over my life. Being an insulin-dependent diabetic has been quite the learning curve! I can’t believe how time-consuming the whole thing has been. Even with the technology of a CGM, which I’m incredibly grateful for (less painful pokes), I’ve had to dedicate hours upon hours to this every week. The government wanted me to prove that I spend more than 14 hours a week on it! Oh, I easily spend more than 14 hours a week on this, lol! I even wrote a detailed list for them about it. I was really happy to hear that my new diabetes doctor agreed that it’s impossible not to spend an extra 20 hours a week managing it all. I feel like it's been consuming me!

And not only that, but the system isn’t set up for type 3C diabetics! I’ve had to work very hard and advocate a lot to get doctors to listen to me and help me forge a path forward. If you’re not a type 1 diabetic, it feels so hard getting a CGM and especially an insulin pump. It is now the spring of 2025, and I’ve been asking for a pump since the early fall of 2024. I have had lots of doctor visits and have been just trying to get my doctors to communicate with each other to get everyone on the same page and deal with staff shortages and all of that, and I’m finally having an appointment next week to discuss getting a pump! I have no idea how long this process is supposed to take, but I’m tired of it and hope it finally happens soon! I hope I'm choosing the right pump!

So, the talk about my pancreas brings me to the next update:

I've been waking up with a pain deep inside of my abdomen for the past few months. I try so hard to tell: where is that pain coming from? It wakes me up. It's such a weird pain, not sharp but dull, and I went to my GP a few times and talked about all the things it could be.

We ruled out a lot of things and, in the end, decided that I'm going to have to wait to see what my yearly scans show. In the meantime, I can get more massages to try to ease muscle tension.

So, after learning that I wasn’t facing parathyroid or thyroid surgery, I’ve been thinking more about the 6 tumours I have in my pancreas. They’re in the head of the pancreas, some in the uncinate process. I read all about this, of course, and got to thinking, maybe I should be talking to a surgeon to see what he thinks. For many years, my old endocrinologist was telling me I’d better get the entire pancreas removed because it's only a ticking time bomb. So I ran that by my new endo, and he agreed I should at least talk to the surgeon...

I went to see the pancreas surgeon that was recommended to me by my endocrinologist. He was a kind man, and I found out he was my (now retired) surgeon's colleague. I was impressed and felt comfortable that this man would be able to do the job.

He told me that the tumours have been stable all of these years and aren’t causing me too much trouble right now and felt that the total pancreatectomy was such a life-changing event that he is comfortable not doing the surgery right now!!! How relieved was I to hear that!??

He said that he would continue to monitor the pancreatic tumours, and if they change, then we will revisit this.

Then he dropped a bombshell on me:

He said that he was looking at a bunch of my past scans and asked me if anyone told me about a lymph node in the mesentery that keeps showing up in my scans. I vaguely remember seeing something “lymph node” show up before, but no one ever mentioned it, so I thought everything was fine. He said it’s not fine, and he’s scheduling me for a (dreaded) colonoscopy asap. Oh, God, why? Yuck!

I asked him, Do you think it could be cancer? His reply kind of eased my mind a bit, saying he's thinking maybe it's colitis. Oh, another autoimmune condition? Cool. Well, I can handle that I said. What’s that on top of Celiac and everything else? Lol

Anyway, I’m confused by this and eager to see what my upcoming GA68 PET/CT and that other awful test will reveal...

I admit I'm feeling a bit run down from everything that 2024 brought, a lot of which is separate from the things I'm sharing here about my health. Health is so important to try to hold on to. I beat myself up for not doing more and trying to be more strict with things; telling myself: maybe if I hadn't slacked off on this or that, maybe things would be easier for me right now.

Certainly, the things I've been doing and striving to stay on top of really do make a difference! I know without a doubt, especially now since slacking off a bit, I feel like maybe things aren't moving in the same direction as before and I can only blame myself. I'm praying for more stability and more time to try to get back on track with some things. But at the same time, I want to also give myself some grace. I'm dealing with a LOT and let's just be honest here: I'm not getting any younger!

So this is what's on the calendar for this month:

• I have 5HIAA and a FIT test, as well as a cortisol test to do this week.

• I’m expecting a call any day for the colonoscopy.

• Next week is my appointment to find out about my insulin pump.

• The following week is the GA68 PET/CT.

• After that, a follow-up with my Endocrinologist.

Life is never dull, never easy, but always worth it!

Thank you to everyone for your loving support. I know some people who read this can relate, and others might find it overwhelming. All I know is that this is the hand I was dealt, and while I do worry sometimes, I lay my worries at the cross: ‘Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand.’

Isaiah 41:10