The big question…

I was interviewed recently, by a writer who is formulating my story about Psoriatic Arthritis and Psoriasis, and they asked me a very difficult question at the end of the interview. The big question was ” What has psoriatic arthritis taken from you and taught you?”

At first I needed a moment to truly gather my thoughts and wrap my head around the first part of the question. What has PsA taken from me? I wanted to cry. Holding back a lot of emotion, I decided to answer the question as honestly as possible without completely breaking down…. I said “it’s taken everything”, “it has robbed me of a normal life” “it has taken a perfectly healthy person and has destroyed them from the inside-out” “it has taken so much from me, but I don’t let it stop me or define me” I proceeded to go on and the interviewer just kept writing tons of notes “I feel as though it’s taught me how strong I am, how determined I am, how persistent I am, to just keep going and fighting the good fight.” “You have to be strong, be your own advocate, do your research, have an incredible health team behind you and support system, and you have to show the world that you got this, it doesn’t have you” I wanted to keep on going, but I knew at the end of the hour and a half interview I felt exhausted. I felt like I had reopened so many wounds, and emotions I felt when I first got diagnosed.

I was spent. So I felt like that big question is a question that all of you can relate to. You can choose to let this disease take over you and consume you every day, or you can choose to fight like you’ve never fought before.

It’s a long journey that you’ll have to deal with for the rest of your life but we are all in it together. Keep fighting the good fight, keep your head up, and remember that YOU are a psoriatic arthritis warrior!!!!!!!

Forgive Yourself

This is for all my warriors out there… Don’t forget about yourself…. but instead forgive yourself, and continue to forgive yourself. Keep fighting the good fight and continue fighting. Don’t forget where you came from and who you are.

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PsA is a Pain in the….

Knee. PsA is a pain in the knee or both knees most days for me. Sometimes that changes…or it moves throughout my body and ends up in other places. Some days the pain is in my feet, with a burning, hot sensation like I am walking on fire. Sometimes the pain is in my arms, hands, and fingers…a constant tingling sensation or sharp nerve pain that jolts my body at times. Sometimes the pain is in my lower back, making it impossible to sit, stand, or even lay down. Sometimes the pain is in my hip…clicking, popping, and causing me agony as I walk. Sometimes the pain is in a toe, or my middle finger..oh boy would I like to just stick it up at some people sometimes….No two areas of pain often feel like the same kind of pain. The pain takes on a body of its own…and has a mind of its own…It just does what it wants to do, which causes me pain.

Pain is something you just learn to deal with when you have a chronic, debilitating, inflammation-based auto immune disease like Psoriatic Arthritis. Pain becomes part of your daily routine and struggle. It’s often hard to forget that you are in pain, because it is always there, regardless of how well or bad you are feeling. You just learn to find ways to work through the pain…to keep going…and most of all SMILE through it.

Pain is not something I like to talk about or bring up to anyone. It is something I suffer with alone. I do not like to verbally complain about it, or share what I am going through because I feel as though know one truly understands, anyway. People may ask you if you are ok, or if you need help, or even how are you doing today? And I’d much rather say nothing at all, then tell them the ongoing list of pain in almost every inch of my body. It’s just so much easier to tell everyone I’m fine, or doing well, or just busy….when in reality I am not ok, I am not doing well, and I’m not busy…I just don’t have the time, effort, or energy to do what I need to do because i’m in so much pain, constantly.

So I’m sure by now you’re thinking, jeez, PSA really is a pain in the #$&*@(!. How can I help to manage this pain? The answer is not easy, and it’s not simple, and it certainly isn’t just 1 answer. There are MANY ways to manage pain.

The first thing you need to do is tell your doctor about the amount of pain you are in. If it unbearable (keeping you from walking, moving, sleeping, working, etc) you have to seek help.

The second thing you have to do is allow your doctor to understand the pain level, and times of day when the pain is at it’s worst. Keep a log of this. Make a little pain #@*(#$ journal. If you don’t want to write or it’s too painful to write…use your phone (hopefully it has voice recognition). Keep a log of it all. When you are in pain, why, and how often. This will help your doctor to give you exactly what they feel will work best for the kind of pain you’re in and also when to take your medication for the pain.

The third thing you need to do is have a great support group to help you when you are in excruciating pain. Hopefully this is either a loved one, family members, or a good friend, or someone you live with that can truly be there for you when you need them the most. Sometimes people are just a phone call or text away. Don’t be afraid to reach out for help, if you really REALLY need it. (Having PsA, I finally have allowed myself to admit that it’s ok to ask for help, even if I don’t want to….I just shut up and DO IT!)

The fourth thing you need to do for pain management, is keep things around you that will help to sooth your discomfort and stress levels associated with the pain. I like to use music, books, essential oils, journaling, lots of water, healthy snacks, magazines, photo albums or pictures of everyone and everything that I love, a comfortable pillow, my fuzzy blanket, ice packs (ready to use in the freezer), eye mask, and anything else that I feel will help me relax and zone out for awhile.

The fifth thing you need to do for your pain is to remember to take time for yourself to heal, rest, and sleep. Without proper rest and sleep, your body will not be able to heal itself properly, thus causing you more pain. Try getting into a healthy habit of falling asleep and waking up at the same time each night. This sleep pattern will help create an internal clock in your body and ensure you are getting enough, restful ZzZ’s!

The sixth and final thing you need to do to help manage your pain is to try to exercise. I know this one is difficult because sometimes when we are in so much pain, we don’t want to move at all. Find a way to move, even if it’s a short walk, or lifting a few weights, doing a few sit ups, or just going for a 5 minute jog. Just keep moving, or else the pain will eventually get worse and worse. You have to try to push through it, even on those days you want to give up.

I hope you find comfort, love, support, and healing. The pain will always be there….you just need to find ways to manage it, control it, and not let it get the best of you, no matter what!!

 

Psoriatic Disease Health Team

This is a PSA Warriors Public Service Announcement!

You must build your very own Psoriatic Disease Health Team!

I really mean it…..because after all…you have to look out for yourself, and take YOUR health into your own hands!

To further understand the process of where to begin, here are some helpful hints:

The first EVER IMPORTANT stop on this journey is finding a PC or Primary Care Physician. This will be your go-to doctor to help maintain your overall health, including screening you for conditions related to psoriatic arthritis and more…You should be getting an annual physical exam with this doctor and all the blood work necessary at that visit! If you haven’t scheduled a physical yet, now is the time to do so because those appointments are hard to get and often take months in advance to book! Call or find a PC now!

The second MAJOR stop on this journey is finding a reliable Pharmacy. If you can’t physically go to one, many mainstream pharmacies as well as online pharmacies will deliver right to you! I use CVS and I also use CVS Caremark for my specialty biologic medication to be delivered right to my house (Air mail usually in 1 day). Find one that will work with you, has great hours, an awesome staff to answer questions, and most of all a pharmacy that has what you need, when you need it!!!!!!!!!!!!!

The third VITAL stop on this journey is locating a GREAT rheumatologist! I am already on my third one, because the first two weren’t on my team…they weren’t knowledgeable enough about psoriatic arthritis or the new medications so I decided to find one that was! You want a Rheumy with lots of patients who have PSA. This way they can offer guidance and support about each biologic, or treatment option there is. There are SO many! You don’t want a doctor who is brand new to the scene, or an older doctor that is out of the loop regarding up and coming new breakthroughs in research and medication. I often find the middle aged doctors are my best bet…ALWAYS do your research about the doctor and their experience prior to visiting. Most offices have websites and you can really get a great understanding by reading reviews!

The fourth and important stop on this journey is discovering a fabulous Dermatologist! You want to find a dermo that knows everything there is to know about psoriasis, and psa! You also want a dermatologist that is knowledgeable about various treatment methods for psoriasis including but not limited to pills, topicals, light therapy, or laser therapy. There are many new options available as well as trials! Your dermatologist should be checking you head to toe for a FULL body exam every 6 months. With psoriasis, our likelihood of developing skin cancer is at a greater risk because our immune system is weaker, and our skin is more vulnerable. If you are considering light therapy (I swear by it), you will need your full skin check up every 3 months to continue light therapy and to also make sure you don’t have any new areas of concern!

The last main pieces of your Psoriatic Disease Health Team include: friends and family members that are there to provide support, understanding, patience, and can help you if something becomes far to difficult to do. Do not be afraid to ask for help or to have someone assist you with finding any of these team members. If someone is not offering support or is trying to understand what you are going through, you can help them understand by being more vocal about your needs/wants. It is difficult both for the PSA Warrior and their loved ones to work together and understand each other. I find that communication is the key! The more vocal you are the better….the more quiet you are the less likely anyone is to know you need or want something…even if it just company or a hug!

Make sure your team is working with you, not against you. Your PC, Pharmacy, Dermatologist, and Rheumatologist should all be working together. They should be sharing important updates, blood work, x-rays, tests, screenings, medications, etc! Make sure you are keeping track of everything as well. Have a little notebook, phone, or file folder where you keep everything together. Update it as often as possible! You may also consider a health proxy!

Refer to this illustration as often as possible…it is a great reminder of what you need  to have with you in order to battle this unpredictable and debilitating rheumatological condition!

Go With The Flow

When you have PsA (Psoriatic Arthritis) you must always go with the flow. What I mean by this is simple…. if you’re having a good day, do what you can (try not to overdo it)…. if you’re having a so-so day, just take it easy and do a little… if you’re having a terrible, horrible, no-good, very bad day… then don’t do anything!

Going with the flow means doing what you know you can do and what your body will allow you to do at any given time. It doesn’t by any means mean to just go crazy and try to do everything on your to-do list! You have to be picky… you have to choose what’s really important and should be done first no matter what… just literally go with the flow. If the first task wipes you out, then so be it! Stop right then and there, and take a break. Take a nap, sit down, relax, breathe, stretch, call a friend, close your eyes…. just chill. I mean it.

The worst thing you can do with PsA is tell yourself that you should push yourself to the max. We all know how those end up… in a serious amount of pain and suffering! You don’t want to strain your body, or your joints, stress yourself out for no reason, or cause a flare-up!

Be realistic! Just keep in mind what your body is telling you to do. Sometimes we think we are superhuman or a superhero and can conquer the world, even if that just means getting dressed in the morning. The small victories no matter how small, should all be celebrated. Do what you can when you can, and don’t let anyone or anything stand in your Way!!!

From one PsA Warrior to another… trust your mind, body, and gut instinct and go with the flow!!!! You got this!!! 💪🏼💪🏼💪🏼💪🏼💪🏼

Weekend Warrior

Not only are we PsA Warriors, but we are Weekend Warriors!

I don’t know about you, but some weekends I just want to do absolutely nothing. My body is telling me to slow down and take it easy. My body sometimes is just putting on the brakes…..I sometimes feel a bit sluggish or achy…

Rest is so important when you have psoriatic arthritis and allowing yourself to take that much needed break is vital, especially on the weekends!

Some weekends, I have 1,000 things to do on my to-do list. Some weekends, I have only a few things to do…either way, I always try to make time to just stop, breathe, and relax. You need to do this as well. NO EXCUSES! The weekend is when I can recharge my PsA battery so I can take on the next week, and tackle any obstacles that come my way.

Without recharging my PsA battery, I am doomed right on Monday morning. I can feel my body shutting down…I can feel my brain fog settling in…I can feel my eyes hurting…I am just not as sharp as I need to be! My body needs a full recharge or the start of the new week, is a NIGHTMARE!

Sometimes my weekends have other plans…Work, family obligations, weddings, parties, travel, chores, and cleaning….but that doesn’t mean I don’t take time for myself. When you have PsA you have to be a little self-centered sometimes. You have to tell people you need a break sometimes. You have to be vocal about your needs/wants. You also have the right to rest. If someone in your life is not allowing you to rest, that’s a problem. Learn to say no, not yes! Never, ever say yes to doing something when you know your PsA wants you to say no! I learned that lesson over the years, and it have fully changed my life.

People in your life will understand. And if they don’t? Get rid of them. Toxic people who do not allow you to rest or say no to doing certain things, need to go…say goodbye! Out with the negative, in with the positive! You need people in your life who understand your condition, understand that you need rest, and most of all, are just patient with you and your feelings.

You have the right to be a PsA Warrior and a Weekend Warrior (even if that means you don’t leave the couch and live in your PJS)….because after-all…we need to sometimes!!!!

Energy Levels & PsA

Attention PSA Warriors!

Psoriatic arthritis, or PsA, is best known for red, scaly skin patches and accompanying joint pain from inflammation. However, due to its underlying causes, PsA can cause a range of other symptoms you may not expect. This includes lower energy levels. Fatigue is a VERY common symptom of PsA, as well as other autoimmune diseases. In fact, as many as 50 percent of people with PsA experience moderate to severe fatigue.

Getting the right treatment for PsA can help reduce all accompanying symptoms, including low energy. There are also other energy-boosting steps you can take through diet and lifestyle changes. Be sure to discuss any new plans such as an exercise regimen with a doctor before getting started.

Since pain and skin rashes are often the focus of PsA, fatigue is another of its most common symptoms. Fatigue is perhaps best described as ongoing tiredness and lack of energy despite getting sleep at night. You might find yourself too tired to complete everyday activities that you’re used to, or you may feel the need to take frequent naps during the day.

If you’re in constant joint pain and discomfort, your energy levels may eventually start to deplete. Your body instead spends its energy trying to alleviate pain, so you may not have as much energy to partake in your regular activities.

Additionally, PsA can also directly affect energy in other ways. The inflammation related to this condition causes your body to release blood proteins called inflammatory cytokines. Upon the release of these proteins, you may become fatigued.

Did you know that lower energy levels may have causes outside of PsA itself? For example, if joint pain keeps you up at night, you might develop a sleep deficit. Medications, such as corticosteroids, can cause insomnia, while NSAIDs, antidepressants, and blood pressure meds can cause fatigue. If you have depression or anxiety (related or unrelated to PsA), you may also have lower energy.

Did you know that your diet can play a significant role in your energy levels? It does!It’s important to focus on nutrient-packed whole foods. Whole grains, vegetables, and fruits are better choices than empty carbohydrates and packaged snacks, while fish and lean poultry are better than eating red meat every day. Depending on your overall health, you might consider enlisting a registered dietitian to help.

So, when you have both pain andlow energy levels, exercise may be the last thing you want to do. However, regular physical activity can improve your overall symptoms by:

• helping to increase energy-inducing endorphins
• reducing overall inflammation
• increasing your blood circulation
• keeping your joints conditioned (you may experience less pain over time)
• improving your quality of sleep at night

If you haven’t exercised in a while because of your condition, it’s important that you talk to your doctor first. Walking and swimming are easier on the joints while still providing resistance and aerobic effects.

You will need to start off slow, and gradually build the amount of time you exercise each day. If you don’t have the energy to invest in 30 minutes’ worth of exercise at a time, break this down into small segments throughout the day instead. Spreading activity throughout the day boosts your energy while also not spending it all on one workout.

Try to focus on exercises that involve deep breathing and meditation (such as tai chi and yoga) can also help beat PsA-related fatigue. These exercises help decrease stress while also activating energy throughout your body. Plus, you can reap the added benefit of flexibility, which improves joint health.

If you think it may seem counterproductive, you’ll also want to take time to relax, especially near bedtime. Relaxing rituals such as reading, nighttime stretches, and warm baths can help calm your nervous system and get you in the mindset for rest. You’ll also want to try to go to bed and wake up in the morning at the same time. Yo-yo sleep schedules can increase daytime fatigue while also making it hard to fall asleep at night. Do your best to avoid napping during the day if you can.

You must fight fatigue for everyday energy!

Having PsA treatment is the key to alleviating related symptoms of the condition, including those that interfere with your energy levels. Still, taking medications for PsA doesn’t always fully resolve problems with fatigue. Lifestyle changes are crucial for anyone looking to increase their energy, but PsA might require a little extra care. If you continue to have issues with low energy despite following your treatment plan, talk to your doctor about other measures that might help, such as short-term sleeping aids.

Truly, it’s also important to seek help when needed. If your fatigue is so bad you can’t perform everyday activities, enlist the help of friends and family. Self-care is essential with PsA so that you can feel like yourself and enjoy life to its fullest.

Stamina

Let’s face it. When you have PsA or any chronic, debilitating condition….your stamina at times can be non-existent. However, there are ways to help you cope with not having much stamina, and there are always plenty of ways to help you build it up!

Sleep. Make sure you are getting enough rest and deep sleep at night. If you can’t seem to get comfortable at night, then nap throughout the day. Small naps are really beneficial and they help me to increase my stamina throughout the work day. If I can’t take a nap, I just make sure to go to bed early!

Eat Breakfast. Even if you’re not hungry, eat a little snack filled with protein to kickstart your day! Make sure to also snack throughout the day with healthy options. You don’t want to eat sugar all day long or too many carbs…then your stamina will crash! Look out for a post regarding PsA snacks coming up soon!

Drink lots of water. You all know you have to do this, so why not remind yourself to every hour have a glass of water, or every other hour. Hydration is so important in order to keep your organs and body functioning on a daily basis, and thus help build up your stamina.

Go for a walk. I am not saying go for a 20 mile walk…..but go for a small walk around the block to start. Each day add a little more mileage to your walk….and slowly overtime you will build enough stamina to walk for at least 30 minutes to an hour each day. It is also really beneficial to find the time, and make the time part of your weekly routine!

Go outside. Even when you don’t feel like getting dressed, ready, or even getting out of bed….it’s great to get in some fresh air, even if it’s just for 5 minutes! Stop making excuses and just find a way to get yourself outside…you’ll thank me later.

Stand. Don’t sit for too long, or for really prolonged periods of time. As an art teacher I have to build up my standing stamina daily. Some days are really hard, and some days are a breeze. Either way, I make sure I don’t stand or sit for too long. It’s important with PsA to keep moving and pushing through, even on those really tough days.

Breathe. Take a few deep breaths and allow your body to inhale the goodness, and exhale the junk. Just by closing your eyes for 5 minutes and taking a few deep breathes in and out, it will help rejuvenate your mind-body-and soul…thus helping to further build up your mental stamina for the day!

One of my go-to PsA products is my fitbit! I love to use to track my progress, sleep, workouts, and steps daily! It motivates me to keep moving and keep going…even when I am tired and don’t feel like it!

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