The Results Are In: An Update

“You have new lab results,” The message says. Finally. There they are. I hesitate to open them. These are the numbers I’ve been waiting for. A tinge of fear. God help me. I don’t even know what numbers I want to see at this point. High or low, I don’t even know anymore. Just answers. I want assurance. I want peace of mind, but I already know these results won’t provide that.

Well. I had a nice break from pheo, but once again, less than a year later, I find that it is not done with me. It’s hard not to be discouraged. Will this fight ever be over?

And so it begins…the familiar routine with the same meds. It conjures this deja vu of horror. The pain and fear resurface. Here we go again.

I know that I can do this. I know what to expect, which is both a blessing and a curse.

I still need an MRI done locally. Then I’ll head back to NIH for more testing and they will give me their take in the situation.

I will say that I am blessed to finally have quality medical care. I’m blessed that we can keep catching these tumors quickly. I suppose I’m glad my suspicions were confirmed, rather then being left to wonder and worry.

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5 Reasons NOT to Get a Cortisol Pump

The Cortisol pump has the potential to dramatically improve the lives of patients with adrenal insufficiency. All current research studies indicate improvements in patient quality of life. With results like that, the pump seems like magic, right?
My own experience with the cortisol pump has been dramatic and highly successful. Positive patient testimonials such as mine, make others suffering with poor quality of life think the pump is the solution to all of their woes.
While I have raved about the merits of the pump, I’ve also been honest about how difficult it has been, and that pumping alone hasn’t fixed everything, nor did any of these changes come quickly.
I am not writing this to discourage anyone from using the cortisol pump. Personally, I love it, and I want this treatment to be an option for every adrenal insufficient patient. However, I don’t want to mislead anyone. I want patients to have a realistic idea of what pumping entails so they can make an educated decision about their treatment.

5 Reasons NOT to Get a Cortisol Pump!

1. You feel great on steroid pills.
This was never the case for me, and I don’t come across a whole lot of people that do, but there really are some patients out there that get by just fine on oral steroids. For these patients, it would not be worth the time and effort to switch to a pump and it would not be worth the extra work and expense to maintain it.
2. You are not a self advocate.
This is still an uncommon and relatively new treatment, (cortisol pumps have been in use about 13 years.) It’s likely you’ll have to search for a doctor that supports this treatment, and even when you find one, there is a good chance they will have very little to no experience with cortisol pumping. If you cannot gather research yourself, present your case to the doctor, be prepared to be rejected, and be willing to try again…it’s not going to work out. Even when you start the pump, you will have better success if you can work along with the doctor to keep track of your own symptoms and adjust your own delivery rates accordingly. You will never be able to just sit back and let someone else do this for you. If you’re not a persistent self-advocate, this is not the treatment for you.
3. Pills are too much hassle.
Yes, pills are a huge hassle. It’s terribly inconvenient to take pills 3-8 times daily. Yes, it’s annoying having alarms going off all the time for meds, and yes it totally sucks having to wake up in the middle of the night for doses.
You would think the pump is more convenient with it’s preset schedule and continuous delivery, and most of the time it is. However, the pump is not something you just set and forget. You will have to use syringes to mix Solu-cortef and refill your cartriges. You will have to change out your inset at least every 3 days following strict sanitation procedures. True, that’s better than taking pills every few hours every single day of your life, but there will be times your pump maintenance doesn’t go as planned. You might get a low units alarm at night when you just want to sleep. You might find yourself with a failed infusion set when you’re out in public. While these aren’t huge problems, it will take a bit more effort to fix than just swallowing another pill. My point is, if pump therapy seems appealing to you because of the convenience- you will be disappointed. Pumping ain’t easy! It’s totally doable, just know what you’re getting into before taking the plunge!

4. You’re afraid of needles.

Pump therapy involves inserting a Cannula into your skin with a small needle. It’s nearly painless when done correctly, but if this sounds like more than you can handle, then the pump isn’t for you. You should also know that the pump is ABSOLUTELY NOT AN ALTERNATIVE TO YOUR EMERGENCY INJECTION! You cannot rely on your pump to infuse 100mgs or more at a time. This will almost assuredly cause your infusion site to fail, which could make an emergency situation even worse. Even if you could infuse all 100mgs without it leaking, subcutaneous absorbtion will be slower than intramuscular. Also, there’s a chance you won’t even have 100mgs in your cartridge to deliver. So don’t think getting a pump will mean you never need an emergency injection.

5. You don’t want to talk to your insurance company.

Even if you’re willing to pay out of pocket for a pump or buy one second hand, you are going to have to contact your insurance company at some point. While the cost of a infusion pump brand new is thousands of dollars, the monthly Solu-Cortef can be the most costly item depending on your insurance coverage. You’ll want to know your DME benefits, be familiar with your prescription plan’s formulary list, and most importantly don’t be afraid to call and ask questions! Ask ask ask! Find out exactly what they can and can’t do, find out how to have an exception made, or how to appeal a decision. Don’t expect your insurance company to get everything right and work it all out for you, but at the same time, don’t just assume they won’t help at all. You don’t know until you try!
I encourage anyone with adrenal insufficiency, suffering with poor quality of life, to look into subcutaneous hydrocortisone infusion therapy. It has really changed my life for the better, but it has been an indescribable amount of work. Even when you start on the cortisol pump, the battle isn’t over. You will have to learn strategies to manage it…by yourself. You will have to ensure you always have a steady supply of Solu-Cortef and pump supplies, even when your insurance and financial situations change. You’ll have to be prepared to deal with unexpected maintenance and mishaps, handle them the best you can, and just keep on going. It helps to be strong willed, assertive, and stubborn. You will have to be resourceful and adaptive. There are times even the strongest, most resilient pumpers I know will get frustrated and want to quit, but ultimately, all of the work is worth it. We take a deep breath, pick ourselves up and keep pumping.

❤️ Michelle

How to Beat Cancer

I hope that when I die no one ever says I lost my battle with cancer. To lose to cancer would be to give in to the fear, to die before you’re dead.

Every day I wake up, and every breath I take is beating cancer. Every moment of joy is a win over cancer. Rejecting fear, and living a life full of love and gratitude is a victory against cancer.

Though I can’t be cured, I hope to keep “beating” cancer for years to come. Fighting isn’t all about treatments and surgeries. It means living courageously on your own terms.

Cancer can take so much from us, but we can still refuse to lose. What we do with the time we’re given is how we truly beat cancer.

15 Months on the Cortisol Pump: Before and After

I’ve had my hands so full with my pheo surgery and recovery, my one year “pumpiversary” came and went! It’s now been over 15 months since starting the cortisol pump.
So what’s changed?

Prior to the pump, I was taking a combination of oral steroids. As much as I researched, tweaked, and titrated the dosage, I still had a poor quality of life. I could do a few simple tasks around the house. On a good day, I could leave the house with help from my husband, and complete a quick errand such as the grocery store or library. After venturing out, I would be completely exhausted for the rest of the day. Possibly the next day too. I spent the majority of my time in bed, though I hardly slept at night. I had all the symptoms of low cortisol, while still getting many of the cushings-like side effects of too much cortisol. My adrenal insufficiency was very poorly controlled. I felt guilty I couldn’t help my husband around the house or take care of my kids. I was jealous of people that could walk, ride bikes, go out, shop, and basically lead normal lives. Mostly I felt like my family deserved better.

Before the pump, I was sick all the time.

 Looking back at photos, nearly every picture I took was from my bed. A picture of my window, my nightstand, my kids near the bed or in the bed with me. That was my limited experience of the world. Every little cold or illness going around, I would always catch. An illness that the rest of my family could kick in a couple of days, would bring me down for weeks, or send me to the hospital. I knew I couldn’t live the rest of my life like this. I was still recovering from over 6 months straight of respiratory illness when I finally started the cortisol pump. My steroid dosage the day before the pump was equivalent to 188mg of hydrocortisone. I saw an immediate decrease in my body’s steroid requirement. As soon as I started on the pump it was around 80mgs, then 75, and in a few months it was into the 60s. Currently 14 months later, I’m at 48mgs. That’s 140mgs less than when I started, and I’m still improving! The Cushing’s symptoms I once had, are completely gone, and it feels great!

The best part is how much this has changed my daily life. I rarely have sick days anymore. I still need to rest more than most people, but compared to my pre-pump life, I’m so much more active than before. I’ve accomplished so much in the past year! Those simple tasks I struggled with before, are hardly any problem at all. I can run several errands a day on most days, I can attend events, festivals, family gatherings, take my children to appointments, etc. I’ve traveled both domestically and internationally. I’ve been to Washington DC twice, had a major surgery and recovered smoothly. Not even a month ago, I flew to Canada solo, and pretty much had the best time ever. I’m actually out living and experiencing life now! I can’t tell you what a precious gift this is!

I don’t want to give anyone the wrong idea, the pump has not been a quick, easy fix. I didn’t start pumping and suddenly feel like Wonder Woman. I had to work on the delivery rates with zero help from an endocrinologist. I had to rebuild my body and the strength I lost being sick and sedentary. I had to make strict changes to my diet, learn what to eat and when to eat it. I’ve had to adapt to my condition, learn to plan and anticipate what my body needs in every situation, 24/7. Even so, there are still sometimes days my body forces me to rest, but thanks to my pump and a lot of hard work, I have less and less “forced rest days.”

This fall, my goal is to keep conditioning my body and regaining my strength. I did find a new endocrinologist locally who ordered the cortisol testing I need to help me fine tune my pump’s delivery rates. Hopefully with this data I can continue to see improvements in my quality of life while mitigating the side effects of steroids. I’ll also be going back to the National Institutes of Health to follow up on the pheo and MTC situation. With any luck, I’ll be confirmed pheo-free and they’ll have a plan for dealing with the medullary thyroid cancer.

So much has changed in 15 months, it is just unreal. I’m grateful for where I am now, and I’m optimistic for what the future holds. Slowly but surely, I’m reclaiming my life and its a wonderful feeling! Thank you to my friends and family that have given me emotional support on this journey!

💕Michelle

Life Without Pheo? A Post Surgery Update

It’s been 2 months since my surgery. For anyone just tuning in, I have a genetic condition called MEN2a. I’ve had it my whole life, but wasn’t diagnosed until 2011. Since then I’ve had six surgeries related to MEN2a. Most of them have been to remove pheochromocytomas

This surgery was different. This time I wasn’t messing around. I went straight to the leading experts in the country, at the National Institutes of Health, so that I can maybe have these mean little tumors gone for good. I was naive in the past. After every surgery I foolishly thought I would be cancer and tumor free. I’ve come to realize over time that it’s not so easy. Unfortunately MEN2a will be a part of my life forever. The good news, both pheochromocytomas and medullary thyroid cancer tend to be slow growing tumors relative to other cancers. The bad news is that both have very few effective treatment options. The typical chemo and radiation are ineffective with these, and would do more harm than good. Really the most effective treatment is surgery. It’s traumatic, and it’s hard on the body, but as long as my tumors pop up in operable places, that’s the best case scenario.

So are my tumors finally gone? 

I’m not going to jump any conclusions like I did after past surgeries. God willing, all the pheochromocytomas are gone for the time being. That was the goal of the surgery. However, as has happened in the past, they can grow back. What I can say, is that I’m feeling very well. I haven’t had any of the painful pheochromocytoma symptoms. My heart isn’t acting crazy lately. My 8 inch abdominal incision is healing well and I’m in very little to no pain. I can’t express what a good feeling this is!

Will this be my last surgery?

Probably not. I still have medullary thyroid cancer metastases. The plan currently is to return to the National Institutes of Health for further evaluation and to come up with a treatment plan. I really don’t know how they will choose to handle this. The good news is that at this time, the MTC isn’t causing any symptoms. I can sort of trick myself into forgetting it’s there. 

I will go back to NIH in 3-6 months for more testing. In the mean time, I need to follow up with an endocrinologist locally. This is not an easy task for someone like me. I can’t see just any endocrinologist. While they are all technically “specialists” there are very few that have expertise in a condtion like MEN2a. To further comlicate things, there is literally no one else with the combination of rare conditions I have, plus using a treatment method as unheard of as the cortisol pump. I’m deep in uncharted territory here. I’ll have to settle for a doctor that is experienced with most of these conditions, and willing to learn more about the rest. Currently, I’m scheduled to see an endocrinologist at UT Southwestern. Unfortunately, they do not work with my insurance company, and my primary doctor was unwilling to help me work out a solution with them. So it looks like I will be paying out of pocket to be seen and treated here. Yikes! I have no idea how I’m going to afford it, but if God guided me here he will make a way.

💕Michelle 

We Finally Know What We’re Dealing With: An Update

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It’s been about 18 months since I found out the biological marker for my medullary thyroid cancer was highly elevated and climbing. Its been 15 months since a suspicious mass was seen on my right adrenal bed, completely by accident.

I’ve seen several doctors in the months since then, searching high and low for answers and treatment. They have all been bewildered. I’ve watched them squint their eyes as they flip through the notes and images. It’s like they are trying to decipher a  language they have never seen before. Their interpretations lacked confidence and their conclusions were often conflicting. I would always leave these appointments with more questions than answers.

What is going on with me?

Today I met with a team that was able to spot my tumors with eagle like precision. They had the technology, and expertise. We finally know what we’re dealing with, but as with every appointment I’ve ever had since diagnosis, nothing ever goes as expected.

Today I got answers.

Yes, there is a tumor on my right adrenal bed. Yes, it is a pheochromocytoma. Even with their cutting edge imaging technology, it is unclear if this is one big tumor or a cluster of 3 tumors. In either case, surgery is advised. There was also a small mass on the left side of my hip. This mass responded to the 3 radioactive contrasts in the same way the pheo did. This would suggest it is also a pheochromocytoma. There were also at least two small masses in the upper part of my chest. These are most likely metastases of my medullary thyroid cancer, and my blood work would suggest the same conclusion.

I will come back to the National Institutes of Health for surgery. This is good, as surgery is my best chance for “cure.” I will meet with the surgical team and discuss the details with them. As for the medullary thyroid cancer, I will have to seek a specialist in this cancer to address this issue.

Overall this was a very positive meeting. The doctor and his team were incredible. I received straight forward, experienced answers for the first time ever. The outcome was not what I anticipated, but of course, that’s how the rare life goes.

I’m thankful that they were so thorough, and found tumors that could not have possibly been found at any other facility. What they discovered here at the NIH will have a positive impact on the outcome of my future.

Michelle

The Rare Life

texture-489276_640As I lay still inside an imaging tube, I think about how grateful I am to be here. I’m at the National Institutes of Health, currently in the middle of my 6th scan in 4 days. I’ve worked for 5 months and traveled over 1,300 miles to participate in a research program specifically for my rare condition.

If there were a Mecca for rare disease patients, it would be the National Institutes of Health. We’re all rare here. We come from all walks of life. We are young and old, we are from all different races, genders, religions and countries. We all have difficult-to-say conditions with impressively small statistics, numerically proving what a rarity we are. Some wear it like a badge of honor, some prefer not to talk about it. In either case, I’m blessed to have met these people. We are so different, but  we share so much of the same experience- the rare life.

We fight back against our conditions everyday as well as the implications of our rarity- baffled doctors, delayed diagnosis, lack of treatment options. We are all here, not just because we need help, but because we want to use our pain as bricks to build a better future for others with the rare life. We subject ourselves to a gauntlet of testing. Countless blood draws, needles in every accessible vein, multiple IVs. We endure radioactive injections, spend hours motionless in claustrophobic tubes. We run ourselves ragged from one appointment to the next, pushing our tired bodies in the name of science.

When I see other faces with me in waiting rooms I feel their weariness. We are all bruised and scarred. We are soldiers in the war on rare disease, and we’re all in this together. One woman in a wheel chair told me, “This is only for the strong.” I know what she meant, not the strong in body, but the strong in spirit. The rare life makes you strong.

Hot tears stream down my temples and into my ears as I stare up at the inside of the imaging machine. I have to lay perfectly still in the tube. I miss my family. My daughter is my driving force, she too is rare. We share the same genetic condition, Multiple Endocrine Neoplasia type 2a. I know that everything I do is for her benefit. Too many people suffer and die unnecessarily because of lack of knowledge or treatments. I will do everything in my power to insure that this NEVER happens to her. I will teach her how to live the rare life, to find your own answers when everyone else is scratching their heads, to clear a path when there are nothing but obstacles in your way, to speak up and demand the care you need when you’re brushed aside, and most importantly, to find joy in each day you’re given.

This is what it means to fight.

This is the rare life.

Taking My Life Back from Adrenal Insufficiency

​I’ve been using the cortisol pump for 8 months now. I wanted to give an update here since I have been spending less time on social media. I am happy to report this time away has not been due fatigue or illness, rather I have been out living my life. Yes, in spite of everything, I have been enjoying a season of good health. Of course that is relative. I still experience things that would send normal people running to their local ER, but to me that’s just life.

Things have been going really well lately. I feel as though I finally have my adrenal insufficiency well managed. It has been, and remains the greatest challenge of my life. This challenge has transformed me, and tested both my mind and body. I’ve learned some very harsh truths about life and the medical industry. I’ve had to research obsessively about endocrinology, nutrition, and medication. I’ve had to fight doctors, pharmacies and insurance companies. The cortisol pump has been the biggest game changer in this journey. Before the pump, my health was gradually declining. I spent much of my time in bed, too fatigued to do things with my family or around the house. On good days I could leave the house, but it would completely wipe me out for days. I was experiencing the symptoms of both too much and too little cortisol because oral medications simply cannot replicate what a healthy body does naturally. I have so much more control with an infusion pump. The first day on the pump my steroid dosage went down by 39% without sacrificing any of my quality of life. My dosage has decreased another 21% since then, and I have a more active life now than I’ve had in 2 years.

Another big change came when I went gluten free. I was in denial about this one, it kind of felt like a dirty secret. I really didn’t want to give up pizza and bread and have a restricted diet, but it happened on accident actually. Mid September I started feeling really good, much more energy than before, fewer low cortisol symptoms. When you live with a chronic health condition, mysteriously feeling better is unusual. I reviewed my data, all of my journals, my meds, my food. What was different? None of my meds had changed. Then I realized that I had been eating all of the same foods as my gluten free daughter, for over a week. Mind. Blown. Was the answer really that simple? Turns out it was. The longer I’ve stayed gluten free, the better and better I feel. I can’t sit here and say this would help anyone else with any medical issue, but it’s been a huge improvement for me. I figure, if I can give up bodily organs in order to be healthy, pizza is really a small price to pay by comparison.

Lately, I feel able and capable. I can handle day to day life with minimal issues. Problems that would have derailed me before are now easily overcome or ignored. I am more involved with my children. I can take them on walks or go the park. We do craft projects, read, and bake together. Not that I’m trying to brag, but this is a big change for someone that hardly had the energy to get out of bed a few months ago.

One of my biggest goals since becoming adrenal insufficient has been to rebuild my strength. Even before adrenal insufficiency, pheochromocytomas made me very thin and weak. I’m sick and tired of feeling fragile and weak. Now I am finally at a place where I am physically able to work on this goal. Exercise with adrenal insufficiency and an active pheochromocytoma presents some unique challenges that makes progress exceedingly slow, but progress is progress. I feel so grateful to have this physical ability and to see my strength and endurance very slowly but steadily increase.



I think if it weren’t for my pheochromocytoma, I could have a pretty normal life now. It’s been relatively quiet I guess. I’ve only had two painful attacks in the past week. I still have small attacks multiple times a day. They don’t feel very good either, but after nearly 7 years of dealing with this, I consider this tolerable. In a weird way, I’m almost grateful for these attacks, as they keep me motivated to get this tumor the heck out.



I fly to D.C. next week for tests and imaging at the National Institutes of Health. With any luck, perhaps this could be the beginning of the end of my “life with pheochromocytoma.” Fingers are crossed!! This will be the first time my tumor has been imaged in over 6 months, so hopefully it hasn’t changed. Hopefully it hasn’t grown much and is still operable, because that is my only chance to be cured of this. I could finally have my body to myself and not have this little tumor control or restrict me anymore. I can’t tell you how amazing that sounds to me.



I have so much to be grateful for. Armed with knowledge, the cortisol pump, and with the help of some diet and lifestyle changes, I am taking my life back from the ravages of MEN2a and the subsequent medical conditions it has caused. I also hope with help from the National Institutes of Health I can one day close this chapter of my life, and this can all just be a memory. A testimony of God’s grace. 

I feel excited and optimistic. Wish me luck! 😉

❤ Michelle

A Cortisol Pump Review: Tandem T-Slim vs. Animas Ping

It’s been over 5 months since I’ve started cortisol pumping to manage my adrenal insufficiency.

I continue to improve thanks to careful management of the pump, lifestyle changes, and reconditioning my body. It’s been a game changer for me, and I’m incredibly grateful for this treatment.

I started this journey back in June with a Tandem Tslim infusion pump. I used this pump for about 3 months and loved it. However, at the beginning of October, the Tslim croaked. I plugged it into a car charger, and smoke came out of the charging port. My poor tslim was fried! 😐

Fortunately, I had just found and purchased a used Animas Ping on Craigslist. Talk about great timing! I’ve been using the Ping since then and wanted to review both pumps from the perspective of a cortisol pumper.

Both pumps are waterproof. You can shower or swim with them. Both use luer lock connections, so you can use the same infusion sets with either pump.

THE TANDEM TSLIM

The tslim is all the rage right now in the diabetes world. It’s tiny, yet has a big 3ml capacity, it’s water proof, and is currently the only pump with a touch screen.

PROs:

-Small and discreet. It’s easy to hide the tslim just about anywhere. Also the belt/waistband clip is pretty cute and comes in a variety of colors.

– Large capacity. This is one of my favorite things about the Tslim. Despite being so small, it can still hold 3ml, which if you mix 1:1 would be 300mgs of SoluCortef. This is convenient for those on a higher dosage.

– Touch screen. The touch screen and user interface are incredibly easy to use. If you can use a smart phone you will have no issues at all with the tslim. It’s so convenient to just dial in a number, or touch a menu option, rather than using arrow buttons to set numbers or scroll through menus.

-Surprisingly durable. The tslim is surprisingly tough for such a little thing. After mine died, I attempted to have it fixed by an engineer. He told me if he were to need a pump this is what he would get. It’s so well made it could not be disassembled even with professional tools and a microscope. So fear not, the tslim is definitely not as fragile as a smart phone.

Overall, I think the small size, large capacity and ease of use are best things about the tslim.

CONS:

-Priming/Reloading. Reloading the cartridge itself takes about as long as any other cartridge, however priming the tubing takes a loooong time. The tslim pumps slow, and it boluses slooowww. It’s no issue for normal basal delivery, but during the priming process and when you’re waiting on a bolus, this gets rather annoying.

– Cost. Your cost is entirely dependent on your insurance coverage. I bought my tslim out of pocket used and it was MUCH more expensive than the Animas Ping.

– Clip comes separately. The cute belt clip I was just talking about? Yeah, you have to buy that separately. It’s $20. Of course that’s not going to break the bank, but you’d think the clip would be included like with the Ping.

– Recharging. You would think the lack of batteries and recharging capability would be a “pro,” but in my opinion its a “con.” It can be awkward being plugged in while recharging the tslim. If you do it while you’re awake, you are pretty much stuck in one spot for a while. I would charge while I was asleep, and that worked okay, but sometimes I’d get wrapped in the cord if I tossed and turned. Some other tslim users charge while in the car, and that sounds much more convenient, but that’s how mine got fried so…it didn’t work out for me. 😐

-25 unit Bolus limit. Tslim will only allow you to bolus 25 units in a 2 hour time period. This is not couting your Basal rate. This means the max you could Bolus in 2 hours is 25mgs. One could argue that if you need more than 25mg it would be smarter to inject. That is probably true, but I’d like to know I could bolus more than 25mg in 2 hours if I really needed to.

– Alarms. The low unit alarm goes off at either 20 or 10 units depending on what you choose. Once it reaches this amount it does not stop alarming. It. Does. Not. Stop. So if you can’t drop everything to fill your cartridge right then, you will be nagged incessantly. You could also consider this a “pro” because it is not going to let you forget to refill it, lol!

THE ANIMAS PING

I had to warm up to the ping. Going from my fancy tslim to the ping with fewer bells and whistles, I just wasn’t impressed, but my feelings on the Ping have changed. It has all the same capabilites as the Tslim.

PROS:

– Pumps fast. So you know how I was just complaining about how long the tslim takes to prime tubing? The ping definitely does not have this problem. It takes only a few seconds to fill your tubing. Boluses are pretty much instant. Much better!

– No extra syringes required. Each of the Ping’s cartridges is its own syringe, so you don’t need a separate syringe to load. So that’s one less thing you have to carry around and one less thing to pick up from the pharmacy.

– Total Daily Dose. I log my pump’s delivery history in an app. With the tslim I had to go to Basal history, then go to bolus history, then add those together for a total. With the Ping, all of this info is in one place. Basal, Bolus and total is right there conveniently under one menu option. I love this feature!

-Battery powered. The ping uses 1 AA battery and it need to be non-rechargeable lithium. These are a lot more expensive than normal alkaline batteries, but OMG they last such a long time it is worth it. I’ve been using the same lithuim battery for about a month now and it’s barely at the halfway mark. This definitely beats being plugged in for a recharge!

-More commonly used. There seems to be more people using the Ping than the newer and more expensive T-slim. This makes second-hand supplies easier to find online in places like Craigslist and Facebook. If insurance pays for your supplies, then it’s not an issue, but for someone like me paying my own way this is a HUGE benefit.

CONS:

-No touch screen. You have to use the arrow buttons to scroll through menus, but this is really only a minor inconvenience.

-Low units alarm. The alarm on the ping will also go off at either 20 or 10 units depending on the setting you choose. The difference with the ping is that once you hit the “ok” button and acknowledge the alarm, you wont hear a peep from it again until you are completely out of SoluCortef in your pump. This is nice if you don’t want to drop everything and refill your pump, but I can’t tell you how many times I’ve “okayed” the alarm and then completely forgot to mix up more SoluCortef. Then I’m caught off guard with “no delivery” and in a frantic rush to mix up more med and fill my pump.

-Bulky. This pump is a little harder to hide than the tslim due the shape of the cartridge and the need to accommadate a battery. Honestly though, at this stage of the game I don’t really care about hiding my pump. I’ve gotten lazy and I hardly ever bother tucking it away in a belt anymore. These days I just clip the Ping on my waist band and could care less about it being out in the open.

-Less med capacity. The Ping only holds 200 units. At a 1:1 ratio that’s 200mg’s of Solu-Cortef. For someone on a smaller dosage, that’s not a problem. However, my dosage is higher than most, so for me this is my biggest annoyance with the ping.

Both pumps I aquired second hand and paid out of pocket. Both are excellent pumps, but considering how much less the ping cost me, I’m pretty happy with the ping and would recommend it to any cortisol pumper. It can do everthing the tslim can, and the dosage history is all conveniently in one place. Smaller med capacity is kind of a pain, but all things considered, not that big of a deal. However, if I were in the future to get insurance to cover a new pump, I’d switch back to the tslim in a heart beat.

*UPDATE (9/15/17): Tandem has since switched to proprietary connections on the tubing. This means it is no longer leur-lock compatible and you would almost have to buy insets directly from tandem. That considered, I think the only real plus to tslim is the touch screen. So in my opinion, the Animas Ping is the winner here.

❤ Michelle

Still No Idea What I’m Doing: Thoughts on Parenting

In regards to parenting…I have no sage advice. I’m not an expert, though there was I time I probably thought I was. “I’ll never be THAT kind of mom.” or “MY children will NEVER do THAT.” Yes, I’ve actually said those things, and karma laughed and laughed. Really, the only thing I can boast is that I have survived the baby and toddler phases. I think that is an accomplishment. Everyone is in one piece.
Today I was looking through my “Kid Stuff” board on pinterest. For the past 4 years or so this is where I’ve saved all sorts of ridiculous craft projects, warm and fuzzy parenting quotes, child-rearing tips from other non-experts, and LOTS of overly complicated solutions to simple problems. That’s basically the parenting side of pinterest in a nutshell. It is like a trip back in time. I remember those phases of our lives. The baby years, full of tips and products I thought would help make me better at caring for two needy babies. I didn’t realize then I was already the best mom for the job. The toddler years, full of explosive tantrums, hitting, biting, picky eating. At the time, I didn’t think we’d ever make it though these problems. We did. The potty training phase. Oh Lord, this was one of the difficult tests of patience and love. I mean, you go into it thinking you’re already an expert at cleaning pee and poo at this point. WRONG. Maybe it’s because we were training two, but our lives were pretty much saturated in pee and poo for at least a month. Still, we made it through. The poonami eventually ended, and now I have somewhat civilized, toilet using children.
I guess what I’m getting at here is don’t take this job too seriously. Not every problem is the end of the world and some of these phases kids go through really aren’t problems at all in retrospect.
So the home-made organic baby food…yeah, your kid is going to try to eat random things they find in the parking lot. All the complicated “sensory activities”…you will drive yourself crazy making sure it is all perfect, and your child will decide to play with an empty shoe box or water bottle for hours instead. The craft projects…”DIY felt tote for crayons”… seriously, just throw those broken crayolas in a ziploc and move on.
This is a lesson I have to keep reminding myself even now with self-proclaimed “big kids.” I’m still making it all up as I go along, still making mistakes sometimes. I think I’ve put a lot of unnecessary pressure on myself over the years. I guess all moms do. Sometimes it helps to stop and ask myself if this is going to matter in a year. Is it really that big of a deal? These kids are growing up lightning fast, and before I know it they will be adults. What will they look back and say was important to them? I doubt it will be anything I found on pinterest. This may sound cliche, but I think it all comes down to love. Stress less, love more. My new parenting mantra.
❤️ Michelle