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Author Archives: mollyschreiber

Type 1 Diabetes

Make diabetes suck less by giving mySugr a try!

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I have been given a mySugr bundle in exchange for a review. All opinions are my own and are in no way influenced by the company providing the items. Affiliate links are included in this post.

For a long time, I’ve been meaning to research some of the unlimited test strip programs out there (for example- you pay a monthly fee and have strips replenished as you need them at no additional charge). I hated that my health insurance dictated how many strips and what brand of strips I had to use, if I wanted my prescription to be covered. I’ve wondered if these products would help parents, who are doing multiple fingersticks a day, for whatever reason (CGM errors, lack of CGM access, etc.), save a bit of money and time.¬†Enter mySugr and their awesome motto “Make diabetes suck less“!

So what or who is mySugr?

mySugr is a patient focused company that have made diabetes a bit more playful and fun (did I really just type diabetes and fun in the same sentence?!). Their goal is quite simply, to make diabetes suck less. Diabetes sucks. It just does, so how exactly does mySugr make it any better to live with? Read on!

The mySugr bundle service

I get pretty excited when I hear the word “bundle”. It sounds like I get “extras” and a bunch of items that go well together and mySugr lives up to my bundle expectation. Here’s what you get:

Blood glucose meter

  • I know, you have a meter. If you’re like me, you have a few. I thought the last thing I needed was another meter. But I love this one!
  • You receive an Accu-Check Guide connected meter. What does connected mean? It means it automatically sends your readings to your smartphone’s app!
  • It’s tiny, fast, and easy to use.

Lancets

  • Shhh! I know! You have a ton of lancets because maybe you change yours as often as me which is slightly less than once a year (gasp).
  • I can say that the FastClix Lancing Device is fancy. Why? It has a drum of lancets so maybe you’ll be more apt to change it because you’re changing a handful at a time? I’ll try to do it myself..
  • And since you’ll now be changing your lancet ALL THE TIME, you’ll appreciate the extra box of them included in your bundle.

Test strips

  • Yes, it includes unlimited test strips. What does that mean exactly? It means that as you use them (and remember, the meter connects to the app?), mySugr will automatically replenish them when needed. No visit to the pharmacy, no arguing that it’s too soon to refill. None of that.
  • To start you off, you receive 5 boxes of Accu-Check Guide strips!

Upgrade to mySugr PRO

Certified Diabetes Educator (CDE)

  • Just to clarify, you don’t get a real live CDE delivered to your house. But in a way, you kind of do!
  • Through the mySugr app, you have full access to a Certified Diabetes Educator, literally at your fingertips.

My thoughts

So does my diabetes suck any less after giving the mySugr Bundle a try? Yes!

First, I love that the meter automatically syncs to the app on my phone. Yes, I have a continuous glucose monitor and an insulin pump. Yes, they collect data but I don’t use them. Why? They’re a pain. If I want to see my pump data, I have to attach my pump to my computer to download. Sure, my CGM has data at my fingertips but I can’t easily see if I was high because I over did a low, was in pain, bolused too little, etc.

The mySugr app allows me to log everything.

  • the type of food I ate (whole grain, fast food, alcohol, etc.)
  • how I was feeling (headache, menstruation, in pain, tired, at work, etc.)
  • how much insulin I bolused for carbohydrates and/or a correction
  • and more- activity, temp basal, open space for notes..

As we know, almost everything seems to affect our blood sugars. As a diabetic who also has Rheumatoid Arthritis, being able to note my pain and activity helps me tremendously. I can come up with a plan with my endocrinologist to better address my higher blood sugars that result from RA flares. This type of logging allows me to have a real insight into things that may cause fluctuations and to be better prepared for them in the future. The less of a disruption diabetes is, the less it sucks!

Giveaway

Yay, a chance for you to give mySugr a try! We’re giving away two, 6-month mySugr Bundle subscriptions (a value over $900) to new mySugr Bundle users in the United States. See how to enter below and good luck!

a Rafflecopter giveaway

Hope

Hitting the reset button for your body

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Today isn’t a Monday. It isn’t New Year’s Day. It isn’t even the first of a month. It’s Saturday, May 5th. Regardless of how insignificant today may be to make a change, I’m starting something new today. I’m hitting the reset button.

Over the past few years, I’ve tweaked with my diet and exercise. I was off gluten for awhile (and felt noticeably different), killed it at the gym. But no “plan” stuck with me.

I’ve realized that lately, I’ve been pushing and pushing my body to accomplish things despite it repeatedly telling me “no”. I’ve gone to the gym and boasted about my hour long workouts, only to not be able to move for two days after.

At a conference last weekend, my body repeatedly tried to tell me to slow down in the form of nausea and dizziness. I pushed on until my body had me hurrying up to my hotel room so I could vomit and lay down, mid session.

When I met with my rheumatologist this week, we discussed the recommendations my dysautonomia doctor had made in regards to POTS and Neurally Mediated Hypotension. She asked how fluid intake was (good, I’m at least very good with that!) and exercise.

I explained my frustration with going to the gym and not being able to function for a few days after. I couldn’t figure out how I was supposed to do an hour of exercise every day. She told me I needed to start over and that it was unacceptable for my body to feel so awful. She advised me to go to the gym, get on the recumbent (ughhhh) bike for 20 minutes and then leave.

Regardless of how good I feel, I have to stop as soon as my time is up. She said I can add on a bit over time, including resistance and strength training, but only after I see how I feel the next day or two.

I wasn’t sold on her idea but as I went for my Rituxan infusion, it started to consume my thoughts. As I pumped this nasty drug into my arm for hours, I thought about how much I am doing against my body. I am constantly pumping it full of drugs, like methotrexate and Rituxan. I eat basically whatever I want because it’s easy or I don’t want to put energy into preparing food. I push myself with the promise of “resting later”.

There are things I can’t change and I know my diagnoses aren’t going anywhere. I’m still going to have to work, raise teenagers, battle the cat for part of my bed to sleep in, and deal with traffic.

But. What if I can be a little more intentional with my body?

I can give it more quality food, the rest it is so desperately begging for, movement that is helpful not hurtful? Maybe will I feel a bit more at peace with my body and not at odds? And how will that peace come through in my interactions with the world around me?

So today, I’ve hit the reset button. I’m still my old self but with a few pending updates to install. This may take awhile.

Dysautonomia

My diagnosis of neurally mediated hypotension

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If you’ve been following me for a bit, you know my cardiologist referred me to a wonderful physician who specializes in dysautonomia. He ordered some tests and I just completed one- the tilt table test.

POTS suspicion

My doctors had originally diagnosed me with POTS. POTS is a relatively easy diagnosis to determine- your heart rate increases by 30 beats per minute/reaches 120bpm within 10 minutes of standing.

Three different doctors recorded my pulse increasing at this level in their offices. But the tilt table test showed that my pulse only increased by 20bpm within 10 minutes of standing.

According to my doctor, he suspects I still have POTS but I’m skeptical- I like concrete evidence (which with these disorders isn’t something I should expect to get- more to come in another post about what causes dysautonomia).

Tilt table test

After standing for 45 minutes and starting the second phase of testing, I vomited and passed out.

My blood pressure had dropped significantly throughout the standing portions of the test (more than a 25 point systolic decrease) which gave me the neurally mediated hypotension (NMH) diagnosis.

The NMH diagnosis makes sense

This diagnosis makes sense- I initially noticed my symptoms when I would stand for a long period of time, talking to a coworker for example, and would feel as if my blood sugar was plummeting (it wasn’t).

It wasn’t until I began having GI symptoms that I spoke with my PCP who started this process.

Next steps

In the past 24 hours I’ve learned a lot- one of the most important things is that I need to take this seriously.

Treatment involves increasing fluid and salt intake, moving slower and smarter, regular exercise with a dedicated extended recovery time. It involves compression wear. It also involves finding out what foods might be triggering my GI issues.

If I can’t get my symptoms under control with these measures, including a medication I’m already taking, I have to consider twice weekly fluid infusions.

I’m so used to heavy prescriptions (Rituxan) or new devices (insulin pump) that I honestly haven’t taken the recommendations my doctor originally gave me, months ago, seriously enough.

Now that I have a concrete diagnosis that makes sense, I feel ready to make significant changes.

Dysautonomia Rheumatoid Arthritis Type 1 Diabetes

Surviving a tilt table test with diabetes and rheumatoid arthritis

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Today I had the pleasure of experiencing a tilt table test. I did a lot of research beforehand on what the actual test entailed, asked others about their experience, etc. Going in, I felt pretty prepared but I walked away with some info to share:

Type 1 Diabetes

You have to fast beforehand which isn’t always the easiest thing to do with diabetes.

  • Make sure you check how early you have to fast- for me it was only 4hrs before the test which is a bit more manageable.
  • If you go low (like I did), apple juice should be your go to. It’s clear and does the trick quickly.
  • It should be ok to wear your pump/CGM. You may have to ask the nurse to check with the physician or someone else in charge as often their initial response is to have you remove it.
  • Be prepared for your blood sugar to respond to the stress this test will put on your body- the anticipation caused me to go low but the actual test made me go high.

Rheumatoid Arthritis

You will be standing in a locked position.

  • Be prepared for some pain during and after the test- the entire test can take 90mins and a lot of that time is standing with very little movement.
  • Bring pain meds to take as soon as you’re done as pain isn’t something they’re necessarily going to address in the cardiac recovery room. I didn’t have anything until I got home and at that point I was feeling awful.

Self care tips

  • Make sure your driver is present during the results portion of the test. It’s a lot of information to process after you’ve just passed out.
  • Wear comfortable shoes and pants as you’ll keep them on the entire time.
  • Take the remainder of the day off. As someone who was back at work right after surgery, you might not believe me, but you will feel horrible after this test. Use your afternoon to give your body the hydration and rest it needs after such a stressful event.
Type 1 Diabetes

New Diabetes case from Sugar Medical for the win!

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I have been given these products as a gift to review. All opinions are my own and are in no way influenced by the company providing the items.

I’d be lying if I said I couldn’t wait to try the following items from Sugar Medical. If you have a chronic illness like me, especially those of you with diabetes, you end up carrying a lot of stuff.

 

 

 

Here is my original “system”- a make-up bag from Target. Sure the bag was cute but it was bulky and wasn’t easy to carry around on its own. I usually had to shove it into my gym bag and it was cumbersome to fit into my everyday backpack.

 

This bag holds my glucose meter, test strips, lancet device, an extra infusion set, insulin cartridge, syringes, bottle of insulin, bandages, fruit snacks, my inhaler (which might be expired..), and tissues.

 

 

 

 

I let the wonderful folks at Sugar Medical know what I typically carried and how I was currently organizing my supplies. They suggested I try an insulated sling bag and a universal supply case.

First thoughts- color! Most standard meter cases come in black which is great if you don’t love color like I do! And a bright colored bag is definitely easier to locate in the abyss (also known as my backpack).

Setting up my new case was a breeze- it has a little Velcro strip (that is quite strong!) to apply to your meter so you can attach it to the case.

The loops are perfect to hold my strips, lancet device, and the tissues I use to wipe my finger on after testing. I still have an extra loop in the middle which would have been perfect for when I was on Victoza injections too.

 

The case holds everything in place so testing on the go is easy- I can test while driving (not recommended) and at the gym without having supplies falling out of my lap.

The zippered mesh compartment on the inside holds my insulin vial, extra lancets in case I get the urge to change mine (like next year).

Once you zip up the case, you’ll find a large pocket on the front with a Velcro closure. I use this pocket to store my fruit snacks (low supplies).

And the sling bag? Equally perfect! I keep my backup pump supplies in it, along with a small bottle of juice. When I’m going from my day backpack to the gym, I simply pull out my meter case and slide it into my sling bag. The bag is roomy enough for my wallet, gym gloves, and headphones too. When the weather warms up, I’m excited to put a cold pack in, since it’s insulated, and take my bag everywhere.

Bottom line:

The case has made having what I need easy to find and portable. If I’m running to a meeting, I can grab my meter case and know that I have testing and low supplies with me. I can also zip my phone inside and use it for errands when I don’t need backup pump supplies. It has given me a bit more freedom in my life with diabetes.

If you’d like to purchase your own Sugar Medical case, please use my coupon code “ATJAX15” to save 15% on one order (expires 4/14/2018 so get your order in soon!). They have plenty of other styles and colors to choose from as well. And if you’d like to read another review about Sugar Medical’s products, head on over to my friend Rick’s site, RADiabetes!

Dysautonomia

What to expect from your first dysautonomia evaluation

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A few months ago, I booked an appointment with a physician who works in the dysautonomia center at Johns Hopkins. My cardiologist had given me the diagnosis of POTS but wanted me to see an expert. I tried googling what to expect and couldn’t really find much so I’ll share my experience here!

History

He wanted to know everything going back to when I was 9 years old and diagnosed with type 1 diabetes. He asked about my dad’s neuropathy, my eye exams, everything he could think of regarding diabetes- not just my A1c (which seems to be all other doctors focus on).

He asked for details around my RA- leading up to diagnosis, how each biologic treated me. I could tell he was concerned about me being on Rituxan. He admitted that my rheumatologist knew much more then him in regards to treating my disease, but he thought Rituxan wasn’t the safest long term medication to be on and he’s right, it’s not, but I’ll save those worries for another day.

Fatigue

This was a big part of our conversation and possibly the most difficult part. If you have extreme fatigue, like me, you’re often spending your time “pushing through”. I drink a ton of caffeine, sleep whenever I can. My doctor wanted me to rate, using a battery scale, how my fatigue had changed over the years. I recalled falling asleep getting my haircut when I was diagnosed with RA and shared that my kids even plan their activities around when they know I’ll need to nap or be in bed.

Current Symptoms

This was a simple discussion- why? Because he had read my notes and actually spoken with my referring physician. What I liked the most was that he had me rank the top 5 issues (he referred to them as barriers) I was having in order of how much they are disrupting my life. I tend to gloss things over with a good old “I’m fine” but he wouldn’t allow it.

Physical Exam

The usual- heart rate, breathing, “follow my finger with your eyes”. He then assessed my reflexes- knees, feet, elbows, hands, chin, and forehead and asked “have you always had hyperactive reflexes?”. I told him I startle easy but it seemed like a silly thing to notice.

I warned him about my crappy knee- he asked if I had trouble moving it and I told him my knee would make some nasty sounds but could even hyperextend so I was fine with movement. Another look and a question- “have you always been hyper-mobile?”. He then had me bend my thumb back to touch my inner arm (I thought every one could do that?!).

Education

My doctor did a great job of explaining POTS- exactly what it is, how many people have it, how much is still unknown. He also explained why he didn’t think I have diabetic neuropathy but that he is concerned that Rituxan may be damaging my nerves itself or by causing an autoimmune response.

Next Steps

A few more tests– importantly an EMG followed by a skin biopsy. Also a tilt table test– my doctors had initially tried not to have me go through this testing because my vomiting was so violent but it is important for insurance and getting authorization for additional testing and treatment.

I am to drink a minimum of a gallon of water a day (can use Powerade Zero towards the total but caffeine doesn’t count). I smartly told him I already drink almost 100oz a day and then my math caught up with me. It’s more than that…

Two pickles a day! He said forget the thermotabs- pickles are inexpensive (in comparison) and a good lifelong treatment. #PickleLife

IV Fluids– He would really like me to start twice weekly IV fluids. In theory, this is great- I know after my bag of fluids with Rituxan, my dizziness and heart rate issues are nonexistent for a day or two. The problem is figuring out how I can possibly get infusions twice a week while I work full time and care for my family (and myself).

The Plan

I’ll get my tests scheduled, buy more pickles, log my water, and keep taking my meds. Once my results come back, my doctor will do a few things- order more tests if needed (but he said he’d rather not) and speak with my rheumatologist in regards to treatment options.

He’s concerned that my high level of fatigue is more POTS related than RA. He may be right as no biologic has ever lowered my level of fatigue. I’d hate to think that I’ve been unnecessarily pumping harsh drugs into my body when I could have maybe had them less frequently or at a lower dose.

He made sure to stress that POTS is a real syndrome. He said people struggle to get a doctor to take them seriously and often end up seeing “professionals” who aren’t doctors and don’t actually help patients in the long run.

If you’ve seen a dysautonomia specialist, was your experience similar to mine? Anything I missed?

Type 1 Diabetes

Type 1 Diabetes Appointments: Then and Now

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Today I had my regular 3 month check-up with my endocrinologist. As I waited for the doctor to come in, I thought about how much these endocrinologist appointments have changed over the past (almost) twenty nine years for me.

The A1c

Today I had my finger pricked (ouch, why I can’t use my own lancet device is stupid) and within 5 minutes had my A1c result. And a quick, woohoo for my 6.6! Despite a pretty painful few weeks from RA and having crazy blood sugars from discontinuing Victoza, I was pleasantly surprised to see this number!

Back in the old days (like the 90s), you had your blood drawn and then a week later found out what your A1c was. At that point, I’d already seen my endocrinologist, made some tweaks from my logbook data. So the A1c wasn’t particularly mind blowing to me personally. My Dad though? It was everything (a fellow Type 1).

When I was a kid, I was constantly compared to what I “should be”. Now, I’m happy that my endo shows me the result, says “great job” and then looks at my data and we make changes from there.

The Logbook

Yes, I’m dating myself, but I’m only 38! Back when I was a kid with type 1, every insulin dose, every blood sugar, had to be written down in a tiny notebook, aka the logbook. During my teenage years, I wasn’t the greatest at documenting everything. But I was great at quickly filling in made-up numbers before we left for my endo appointment. Lucky for me (now, not then), my doctor would point out that I used too many even numbers and to work on having more of a variety the next time I filled it out. Oops.

I think that’s the only time I’ve been in trouble from diabetes. I can recall a nice lecture in our living room from my Dad. I’m thankful for my endo calling me out and my Dad enforcing the logbook- my teenage years could have really caused some damage to my body if they hadn’t been looking out for me.

Bloodwork

From 9 to 16 years old, I had the standard A1c and kidney function labs done every few months.

When I was 17, I switched to an adult endo and she insisted on testing my thyroid function in addition to my A1c and kidney function. That proved to be invaluable as I was diagnosed with Hashimoto’s Disease shortly thereafter.

When I was in my 20s, another endo insisted on adding Celiac panel testing to my regular labs as the relationship between celiac disease and type 1 diabetes was a hot topic. Thankfully, I tested negative (and have been tested a few other times since).

Now, at the ripe old age of 38, I had Addison’s Disease labwork added to my list today. Although my endocrinologist agrees with my cardiologist’s diagnosis of dysautonomia, and specifically POTS, she also said there is a link between Addison’s and type 1 and she thinks it’s worth a lab draw.

Discussing Medications

Insulin is a given- and that’s always the main discussion topic. But now that I’m older and have had type 1 for almost 30 years, we often discuss adding some additional medications to help my organs stay as healthy as they can be despite the havoc diabetes can cause.

A few years ago we added Lisinopril to help protect my kidneys. I’m on a relatively low dose and don’t experience any side effects.

Today we discussed statins. Although my cholesterol is in the good range, my heart has still had to deal with diabetes for a long time. There’s some evidence that shows taking statins before age 40 could help reduce the risk of cardiovascular disease. We decided to see how my cholesterol looks at my next visit, see the results of my upcoming echo cardiogram (routine), and go from there.

I’d love to hear if you’ve had similar changes in your doctor’s visits over the years!

Rheumatoid Arthritis

Is it ok to fail?

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Today I had to call out. I am typically good at putting on a brave face and getting myself to work. With my multiple surgeries over the past few years, I only took off the actual surgery day, and sometimes the day after, and was right back to working full time, teleworking if I had to. But today? I had to call out.

I’ve had a rough few days with my joints- could be the weather, stress, something I ate, or the simple fact that Rheumatoid Arthritis is a bully of a disease and will ultimately get its way.

I feel like I failed. I feel angry. Disappointed. Isolated.

But mostly, I feel weak. I feel owned by my body and the diseases that plague it. The physical pain has slowed me today- I don’t feel mentally sharp, I feel emotional.

And I don’t like it.

But have my years of pushing forward despite my illnesses, given me an irrational view of “success”? So much so that needing to take a day to rest makes me feel like I’ve thrown in the towel on working forever?

Society shows “normal” people taking DayQuil to get to that important meeting and taking energy shots to get everything on their list checked off.

Even the latest Enbrel commercial shows a child who “gets his Mom back” after she starts taking the medication for Rheumatoid Arthritis. My daughter watched that commercial and asked me if I’ve ever tried Enbrel (yes).

I try to show the good and bad of my diseases- the injections, the gym triumphs. But I need to do a better job. I need to show days like today- a day where I called out of work and have not moved from the couch or eaten a single thing. Because if someone out there is “pushing through” because they’ve seen my feeds, then I’m doing a disservice to them, my disease communities, and more importantly, myself.

So yes, sure, I failed today. I failed to push myself to go to work despite horrible pain and stiffness. I failed to hold back my tears and act like everything was fine.

Rheumatoid Arthritis Type 1 Diabetes

I am afraid of my body.

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My system (used here to reference my entire being- mind, body, and soul) is a mess. It’s as if my body and mind are two separate organisms who used to be friends but now barely utter a “hello” when they see each other.

I find myself constantly tiptoeing around, afraid to set off the bad temper my body has. I slowly get dressed, pulling on compression socks in slow motion as to not upset my already very sensitive leg muscles. I sleep in compression tights in hopes of not waking up in serious pain throughout the night.

I snack on pretzels all day long, starting early in the morning as I drive to work. I try to have something salty in my stomach in hopes that I won’t find myself vomiting, seemingly out of nowhere. I chug electrolyte enhanced water, even when I’m not thirsty at all, to try to appease my body and it’s abnormal sodium need.

My mind gets angry when my continuous glucose monitor beeps incessantly while I’m trying to sleep. My blood sugars are rising and falling without much warning lately.

The unpredictable nature of my body lately, especially the violent vomiting, has my mind feeling so many emotions. I’m fearful of the intense pain that I’ve been feeling lately. I’m nervous that I could vomit in the middle of the grocery store, without warning, especially since I just got quite ill at work and am still embarrassed. I’m frustrated that others take their good health for granted. I’m sad that this is the body I’ve been dealt with.

But I’m also proud. I’m proud that I am still working full time with additional advocacy work on the side. I’m proud that because of my illnesses, I’m raising two very empathetic children who understand that a lot of diseases are invisible. I’m proud that despite the pain and vomiting, I still make myself go to the gym a few days a week for a pretty intense workout. I’m proud that I’ve created this outlet to share my life so I can connect with others and show them that they are never alone in the battle with their own body.

Rheumatoid Arthritis

Is your medication still working for you?

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Like a lot of people with multiple chronic diseases, my medication list is long. Some medications, like insulin, are a no brainer for me- they are absolutely necessary. But sometimes I find myself wondering if I still need everything on my list.

When my rheumatologist realized I was losing a lot of time to my methotrexate “hangover”, she asked me to try a half dose and see if that made a difference. It didn’t. I still slept away my Sunday. She asked me to skip a week of injecting methotrexate. And we learned, I still slept away my Sunday. And I felt awful without my weekly dose of that magical yellow liquid. So lesson learned- methotrexate helps me and regardless of my medications, my body needs a day each week to rest and do nothing else.

When I started Rituxan last summer, I quickly learned that it is an excellent medication for me. I’ve noticed over the past 3 months that I have less pain. I still flare and have pain in my damaged joints that I need my breakthrough pain meds for. But I’ve wondered if I really need my Butrans patch?

You might be asking- if your pain is controlled and you’re feeling better, why would you want to change things up? When I initially was prescribed Butrans, my pain was a mess. My pain owned me. I was managing multiple medications during my work day to try to keep my pain somewhat under control. My evening breakthrough meds weren’t always able to bring my pain down.

We decided to try Butrans to get a low opioid dose in my system all day, without having to take even more pills. The hope was that this patch would give me enough relief that my breakthrough meds could really help me. And that is exactly what happened.

Since starting on the patch, I had major knee surgery and started Rituxan. I’ve also lost some weight and worked on my diet (still very much a work in progress).

I mentioned discontinuing Butrans to my pain management physician and she agreed with trying to lower my dose or get rid of the patch completely. But she did ask me to get through the holidays and my next set of infusions before attempting a change.

So here we are. Today I’m going to drop my dose down by 50%. If that goes well for 2 weeks, I’m going to try not using a patch at all. Although I’m staying optimistic, I also realize that my pain may come back rearing its ugly head. And that’s ok. I’ll know that my body needs this medication and it’s worth the cost and side effects. I won’t have to wonder if I need it, I’ll know. And knowledge is all I’m looking for.