Tag Archives: medications

The Medication Cycle: When You have a Chronic Illness

I came up with this medication cycle idea after I started some new meds recently. Annoyingly, the amount of meds I need to take to keep my body functioning is rising. You might hear from people who are not chronically ill that you’re taking too many medications. There might be something about big pharma in there too. Cue eye roll*  What they fail to realise is that without these medications, you can’t sleep, you can’t eat, you can’t get out of bed etc. The list goes on. It is not unusual for a person with a chronic illness to have multiple illnesses or dysfunctions.

This week I decided to do a tongue-in-cheek blog post. I know some of the posts have been heavy of recently. However, these posts are so necessary. But, I promise I will continue to mix things up. I know that the experiences below may not apply to everyone. I have based this cycle on what I and a lot of my spoonie friends experience.
Day One medication cycle

The New Medication

You go to see your GP with some weird symptom. You’ve probably been dealing with this issue for a while but it’s been put on the back burner while you deal with other debilitating symptoms.

You walk out of the doctor’s office with a prescription and you feel relieved that you’ve been taken seriously. It might be weird to healthy people but sometimes the idea of a new medication offering relief from symptoms can actually be exciting. 

This is going to the medication that changes my life, you think. This is the one. You’ve probably said this 20 times before but this time, it’s going to work. Your life is going to change for the better. You’ll be able to work again. You’ll have a social life. Basically, you have unrealistic expectations about this medication. You are the kid skipping home from the toy shop, eager to tear open the packaging.

Day Two medication cycle

The Waiting Game

It’s not working. That’s it, your hopes and dreams are crushed. Your doctor did warn you that it might take a while for the meds to work but nope, they are just not working at all. You’re frustrated. You throw yourself on the bed in despair, like some Disney Princess who has been locked in a tower.

Day 7 medication cycle

The Side Effects

You start to notice the original symptoms are not causing you much trouble now but God damn it, you’re starting to experience some new symptoms. Alternatively, your symptoms have become much worse. You take out the perfectly folded leaflet that seems to go on forever. You eventually find the section in your language and the list of side effects is as long as your arm. But, there it is in tiny black writing, the symptoms you’re trying to treat are also side effects of this new medication.

The medication is used to treat dizziness and yet the front warning says “Warning: may cause dizziness”. Like, WTF?

or

You develop a whole new host of symptoms. The medication that was prescribed to treat your overactive bladder is now causing insomnia and constipation. That’s right, first, you can’t stop running to the bathroom and now you’re lying awake thinking about all the times you could poop with ease.

The. Weight. Gain. Don’t even talk to me about the weight gain. As disabled people with chronic illnesses, it’s fair to say we don’t get out much so you won’t exactly find us hitting the gym five days a week. But also, we may not eat a whole pile of food thanks to some other medication you’re on or illness. Yet, you’re bigger than when you were in college eating 16-inch pizzas by yourself after a night of beer.

For once, I would like a medication that says “Warning: may cause extreme awesomeness”. You know, you wake up with the body of an Olympic swimmer, with a voice like Beyoncé and the baking skills of Mary Berry.
Day 14 medication cycle

Back to the Doctor

 

That’s it, you got to go to your doctor and sort this all out but, you’re so tired from not being able to sleep and you’re in too much pain from not having pooped for a week that the very idea of getting up, washed and dressed is the equivalent of a “normal” person running a full marathon. “Be graaaaannnnnddd”, you say. I’ll survive another day.Day 17 medication cycle

Back to Square One

It has taken you three whole days to work up the strength to get to the doctor’s office. You sit there in the waiting room anxiously. The memories of not being believed or your symptoms dismissed rise to the surface as they do after years of mistreatment (or rather no treatment at all).

You are finally called in and you sit there, waiting for the doctor to bring your file up and notice the new meds started the two weeks before. You explain that you’re having pretty crappy side effects from the news medications. This is when one of two things will happen.

  1. You’ll either be given a script for a new medication or

2.  You’ll be told that all this type of medication produce these side effects.

If it’s number one? Begin the cycle again. Two? You’re given new medications to treat the side effects and the cycle for those medications begin again.  Sometimes, you might be lucky and the new medications might just work.

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The Zebra Mom Trials-Pill Drill

I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Hey there, hi there, ho there!

So, I’m on a mission right now to find the best gadgets for “spoonies”. Things that make life bit easier can mean the difference between living a normal life and being bed bound. Last time we looked at the Oska Pulse which is a truly life-changing​ device. However, there are some meds that I still need to take multiple times on a daily basis.

I am useless at remembering to take my meds. Brain fog has a lot to answer for that. So I could just set a reminder on my phone, right? Yeah, I could but I live in a house where the minute you set something down, it gets swallowed. Plus, when the alarm goes off, I usually just silence it and if I’m in the middle of doing something I say to myself “Yeah, I’ll get my meds there in a minute.” Then I forget and wonder why I’m in so much pain or feeling dizzy an hour or so later. This is where the Pill Drill comes in.

What is a Pill Drill and how does it work?

Wired.com have described the Pill Drill as  “the Fitbit for taking medication”. I couldn’t agree more (not that I have a Fitbit).

So the first thing you need to do is to set up the hub. The hub is the heart of your kit. Once you set it up in whichever room you tend to keep your meds, it will remind you when to take your meds and keep track of your intake.

Pill drill cover

Once you’ve taken your pills, you scan the pod from your weekly pill strip. Each pod has a built-in​ scanning tag. The lids are very easy to open and close. Which is handy for people like me with weak hands so ensure you keep it out of reach of children.

The weekly pill strip comes with two pods for each day (e.g Monday 1 & Monday 2). If you take pills more than twice a day, you can order extra pill strips (RPP $29.95). The pill strip also comes with a strap to keep the pods secure while traveling.

In Ireland, ​we generally don’t get medications in pill bottles but rather in boxes so I haven’t used the scanning tags myself. But, if you have pill bottles, you can attach scanning tags to them. You will receive 12 scanning tags (A-L). You can order an additional tag set should you need them (RPP $12.95).  They would also be helpful for items such as inhalers, injections eye drops or other irregular shaped items. The tags are can be placed in the three tag holders provided. More are available should you need them ($4.95).

In addition to scanning your pill pods, you can also scan your mood cube. The cube has five faces which displays a range of feelings you may experience on a day to day basis. These include: great, good, OK, bad and awful. The cube will register your mood and track health patterns over time. This cube is also especially handy for those who care for loved ones. If you’re not around, you can be notified in how the person taking the meds is feeling over the day. Once you scan, the carer/family member/loved one will be instantly notified. This is an optional feature.

The Pill Drill app syncs with your hub in real time. Here, you can edit and modify doses, receive reminders and log doses, receive adherence updates and track mood and symptoms. The app is totally optional.

My thoughts on the Pill Drill

I did have slight issues setting up the Pill Drill and connecting it to the WiFi. It didn’t take long for us to sort it out though. If you are not tech savvy you might need someone to give you a hand. Pill Drill does have an FAQ page to answer the majority of questions you may have in setting up.

Once everything was set up, it was pretty easy to use. I no longer forgot to take my pills and taking them at a scheduled time every day did improve my symptoms.

Each week my husband fills the pill pods (I find it very difficult getting pills out of their trays) which means I don’t have to spend five minutes fumbling around trying to get pills out each time I needed to take them. I do need to order a second set of pill strips as I take some meds up to four times a day. Pill Drill states that they ship to the US, Canada and Australia but you can contact them if you would like to order them in your country. I will use my addresspal (An Post) account to have the extra strips delivered to me.

The kids enjoy scanning the mood cube for me. I didn’t use the option of linking the Pill Drill to my carer but I do plan to do this as he is away for entire days every week or so. I really like the availability of this feature for those who do need caring for. It is reassuring to know that even if you’re not around, that you can make sure the patient is not putting themselves in danger or causing unnecessary symptoms by missing their meds. Knowing how their feeling is lovely too. If you get a notification that the patient is feeling very unwell, you can go to them/call them/doctor.

The app is really only needed if you need to modify dose and/or are out of the house and away from the hub. If you’re away from the hub, your phone will remind you to take your meds and you can log your dose so that your adherence score stays consistent. I would recommend relying on scanning the pills on the hub rather than logging the dose on the app (if you’re at home) so that you’re not tempted in knocking off the alarm the hub makes. This is because you may forget or delay to take your meds. So if you’re home, use the hub as consistently as possible.

One thing that would make the Pill Drill even better is a feature to remind you to order more pills from your doctor and/or pharmacy. Since it tracks your intake​ already, I imagine it wouldn’t be difficult to incorporate such a feature. You might say you would know how many pills you have left seeing as you put them into the pill pods each week but if you suffer from brain fog, you live a busy life or someone else is filling your meds, you may forget to order a new script.

Product rating: 4/5

The Pill Drill Smart Medication Tracking System retails at $199.00 with a 30 day money back guarantee. The kit includes:

Pill Drill hub, 2 pill strips (Monday-Sunday x2), 12 scanning tags, 3 elastic tag holders and the mood cube. The app is available on the App Store (Apple) and Google Play (Android).

For more information about Pill Drill see the wesbite or Facebook page.

Until next time,

Z.M

x

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Breastfeeding for the Chronically Ill-What you need to know

Breastfeeding has become such a touchy subject for the last few years and when ever it is discussed it inevitably becomes the breast vs bottle debate. Isn’t anybody else tired of this?! I blame the media (yes, I’m a journalist) because they have instigated ‘mommy wars’ in an attempt to generate more likes and followers on social media. I’m not here to debate ‘whether public breastfeeding is acceptable’ or ‘how long is too long?’ If you must know, I believe in breastfeeding to natural term which by the way, is anything up to 7 years of age. Will I feed a 7 year old myself? Probably not. Will I judge a mother who does? No. Her child, her business.

Anyway, this week I am offering some words of advice to chronically ill moms who wish to breastfeed or are thinking about breastfeeding. This is just touching on some points, if you want me to go into detail about anything, feel free to email me hello@thezebramom.com

1. Health benefits for mom

You’re chronically ill. God forbid you end up with any other ailments other than the crappy lifelong illness you are living with. Breastfeeding reduces a mother’s risk of developing certain cancers, diabetes as well bone conditions such as osteoporosis.

2. Health benefits for baby

“Exclusive breastfeeding for six months has many benefits for the infant and mother. Chief among these is protection against gastrointestinal infections which is observed not only in developing but also industrialized countries. Early initiation of breastfeeding, within one hour of birth, protects the newborn from acquiring infections and reduces newborn mortality. The risk of mortality due to diarrhoea and other infections can increase in infants who are either partially breastfed or not breastfed at all” (WHO)

If your condition is genetic, like mine, you may wonder whether it is worth breastfeeding at all. Absolutely, it is. Again, breastfeeding reduces your child’s chances of developing a massive range of illness and chronic conditions such as diabetes. Breastmilk is the perfect food for your baby. Anything else compromises their gut flora and may lead to problems such as coeliac disease and other food allergies.

3. Breastfeeding is the easier, less exhausting option

The first six weeks are tough and you feel like you are just feeding all day long. This is totally normal and necessary. For the first six weeks your baby is trying to establish your milk supply. Best thing to do is just sit back, relax and enjoy the time with baby. Think about how exhausting it would be if you had to prepare formula, sterilise, wash bottles etc. And the night feeds, Jeez! Having to get up in the middle of the night to make a bottle and wait for it to cool down, that is exhausting. I formula fed Bendy Boy and honestly, I was like a zombie.

After the six week mark your supply will settle and you will have a couple of hours between feeds to go about your day. Cosleeping is also really great for sick breastfeeding moms who need the extra sleep (if you are on medications that make you sleepy you will not be able to cosleep) Baby is close by that you can just pop boob in his/her mouth and you can drift back to sleep. Studies show breastfeeding and cosleeping moms get more sleep.

 

Breastfeedingfor the chronically ill-2

4. It’s free and always ready to go.

If your condition has caused you to give up work, you might not have the funds to buy formula every week. You’re talking on average a tub of formula is €12. That’s €624 a year! Never mind the cost of bottles, sterilisers and electricity costs.

5. You can breastfeed on medications

I am a massive fan or Dr Jack Newman. He has been a Godsend for me when it comes to getting information on medications. Many misinformed health care professionals will tell you that you can’t breastfeed while on medications. This is not true at all. I am taking Tramadol and and Midodrene for pain and low BP. If you’re not sure about your own medications, check out the Lactmed app for android and iPhone, contact the Breastfeeding and Medications Facebook page or check out Wendy Jones’ factsheets on her website.

Paediatrician Dr Jack Newman, IBLC says:

“There is almost no drug that requires a mother to interrupt breastfeeding. The real question is which is safer for the baby: Breastfeeding with tiny amounts of drug in the milk (and it is almost always tiny) or formula? Clearly, in the majority of cases it is safer for the baby to breastfeed.”

Breastfeeding doesn’t have to be all or nothing. Every drop counts. If you can’t breastfeed yourself, the World Health Organisation recommends:

Milk from a wet-nurse, or
Milk from a milk bank, or
Breastmilk substitute (formula) fed by cup.

I expressed for my daughter for the first six weeks as she was severely tongue tied. I also used donor milk on a couple of occasions.

6. If you’re having trouble, go to a lactation expert

You go to see a cardiology consultant for your heart, a rheumatology consultant for your bones and joints so why would you not see a lactation consultant for breastfeeding? Breastfeeding is a learned skill and all mothers need help in the early days. Sadly, there is a huge lack of knowledge amongst health professionals when it comes to breastfeeding. Most health care professionals have little to no formal training in lactation (even a lot of midwives provide inaccurate information) so you will need to get in touch with an IBCLC or Le Leche League. Breastfeeding should not hurt and despite what some doctors (and the Fed is Best Foundation) might say just 1-2% of women will not produce enough milk. There are even some who say that some babies “just don’t the like milk” or that their baby is allergic to breastmilk (this is extremely rare and it’s far more likely your baby has a cow protein intolerance). Even if your supply is low, there are many things an IBCLC will help you to do to get your supply up such as a supplementary feeding system. If you are find breastfeeding difficult, do contact an expert as soon as possible to avoid further problems. There are so many myths out there so it’s important to talk to someone with extensive training.

If you have any questions, please feel free to comment below. I will do my best to help.

Until the next time,

Z.M

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