How Having a Routine Can Be Beneficial

Are you one of those people who need a routine in your life?!? Do you plan out your day, every day? Do you obsess about making sure you accomplish everything on your list?!? I used to be one of those people. Especially when I was working, I would plan out my day at work and then plan my week around the things I needed to get done. But since I’ve gotten sick my routines have gone out the window!! I know I can’t be the only one who has experienced this! Even though it is hard, it is important to find a way to keep some routine even when you are chronically ill.

When you are living with a chronic illness, nothing about your life is certain. Symptoms come and go daily, weekly or even hourly on bad days. Changes in your schedule are common due to having to cancel things or rearrange your day because of your symptoms. Due to the fact that nothing in the life of a person who has a chronic illness is promised or set in stone. However, it is essential to find a way to keep a routine.

Is having a routines the same as having a schedule? No!! A schedule is defined by dictionary.com as a series of things that need to be done or events to occur at or during time or period; a time table. While a routine is defined as common tasks, chores, or duties that need to be done regularly or at specific intervals; typical or everyday activities. The big difference between having a schedule that you stick to, versus having a routine is the time factor! A schedule requires you to do specific activities at specific times. Where a routine is a set of activities that are generally done regularly, but not at a specific time. You can think of it this way. A schedule tasks that need to be done at a specific times. Like going to a drs appointment! While a routine are things that you do habitually, things you do pretty much every day. An example of a routine would be brushing your teeth every night before you go to bed!

A schedule is important for kids bc they need the structure. But do adults benefit from having a schedule like kiddos? Yes, the average adults does. But, adults with chronic illness DO NOT get the same benefits from living by a schedule. Living with a chronic illness means that we have to learn to deal with the unexpected changes in plans. These changes are common for the chronically ill, not because we don’t want to do things, but because our bodies won’t allow us to do those things. You may be hit with anxiety or depression, or even a flare which may occur without any warning. These are the things that make living by a Schedule almost impossible at times.

Routines are very beneficial to those living with a chronic illness. A routine is like having a schedule but without time constraints. Having a routine can help you get more quality sleep which is an essential for those with chronic illness. It is also beneficial because it will help you remember to take your medications and supplements when they are due.

What are other benefits of living by a routine? A routine provides you with the ability to come more EFFICIENT. By keeping a routine it creates a structure of our day to day tasks. A routine also reduces the need to make certain decisions. Thus you can save time planning and you have extra room for things that might come up Unexpectedly. A routine can also BUILD CONFIDENCE. Sticking to a routine gives a person a huge sense of satisfaction, and helps to build ones self-Confidence. Having a routine can also REDUCE STRESS. Which is important for those with chronic illness as stress can cause a flare of any condition. By having the routine is gives you more flexibility to be able to deal with issues that may pop up. Thus knowing you have tings under control will significantly lower a person’s stress and enabling them to focus on other things that need to be done.

We all have a routine that we keep. Mine for instance in the morning is to get up, stop off in the bathroom and then get some breakfast and take my morning meds. After that I spend time catching up on social media and looking at emails. This is just an example of my morning routine. This routine ensures that I take my medications that I need. If I falter from that routine I will forget something.

If you are able to establish a routine and try to stick to it everyday no matter how you feel then in the long run you may actually feel better. If your body knows that you are going to get up and eat and then stretch and take a walk, your body won’t revolt as much when you try and do those things. Your routine also helps you conserve energy because you can adjust your activities so you may be able to get out and do the things you have scheduled and not have to cancel them so often. Having a routine may make you seem more credible to your friends and family. Which may ease any conflict you may have with those people over your canceling plans. So living by a routine is the best way for the chronically ill to live their lives.

If you feel like you need some extra help figuring out your routine and getting it set up there are a ton of apps that can help you. You can simply download them in your smart phone or tablet. They can help you scheduling, prioritizing and even relaxing. Below is a picture from the Apple store that I found doing a search of “Routine.” The ones I chose to show you had the best reviews of al the ones I found. I hope this is helpful.

With Love,

Amber

Depression….5 Tips for Overcoming

Depression is real! Not just for those who are chronically ill but also for those who aren’t! This time of year is especially bad for depression because it’s cold and you don’t want to go out. And if you are chronically ill you don’t get to go out as often because of all the cold and flu going around. Especially this year with the flu shot being approximated to be only 10% effective. So what can we do to handle depression in the winter months that doesn’t involve medication. Let’s look at a few options.

1. Find and stick to a daily routine– This is so important especially for those of us who are not working. The days run together and you don’t know what day it is or even what time of day it is! So finding a routine that you can stick to everyday will help keep your days less blah.

2. Set Goals– When you are depressed you feel like you can’t get anything done. So set small goals for yourself EVERYDAY!! Some that you know you can accomplish and mark off this list. I don’t know about you but for me I love being able to cross things off a list. There is such a feeling of accomplishment. (For information on how to set goals see my previous post on goal setting)

3. Exercise – To many spoonies this is the most annoying topic to discuss at a drs appts. When you feel like crap the last thing you want to do is exercise. But it’s proven that exercise releases endorphins (the feel good chemical), and it will make you feel better. Even if you can just get in 10 min two or three times a week. And it doesn’t have to be some great big workout with weights and sprints. Just walking around the block or doing yoga is plenty. Just something to get that heart pumping.

4. Take on some kind of responsibility– I know from experience that the last thing you want to do when you are depressed is commit to anything. But especially for those who aren’t working or going to school this one is important. Try and take on something like cooking meals for your family one or two nights a week. Or find some place to volunteer a couple days a month. Much like setting goals if you you can accomplish something it will make you feel better overall and help to counter the depression.

5. Try to have fun– When you are depressed usually the last thing you want to do is stop sulking and have fun. But try anyway. If you enjoy reading pick up a new book, if you’re a movie person go see the movie that you’ve been wanting to see. If your favorite things still don’t seem fun just keep trying. Eventually you will get out of that rut!

Depression is hard and frustrating. And something that everyone deals with at some point. But there are ways to fight depression other than medications. If those non-pharmacological methods don’t work it might be time to talk to your doctor. There is nothing wrong with taking medication if you need it and don’t let anyone make you feel that way if you need to go that direction. These are just a few ways to help fight depression, there are tons of options and books you can read on the matter. Because one option isn’t going to work for everyone. If you feel like you are slipping to far it’s okay to reach out for help from a friend or family member. Remember, depression sucks but it is only temporary!

Setting Goals For The New Year!!

Happy NEW YEAR Friends!!! I can’t help but sit here and reflect on all the things that happened in 2017. There were ups and there were downs, sadly this year was full of downs and not so many ups. But that’s just life. The world throws all sorts of things at us all the time and it’s how we deal it that really matters!!! I also can’t help but think about what I want out of 2018. I won’t be setting resolutions because I seem to never follow through. So this year I will be setting goals. Both short term and long term goals so I have something to always be working on. And I want to share with you how I set my goals.

When I set goals I use the acronym SMART to set them.

S- Specific – what exactly you want to accomplish. What is you want to do. For me a specific goal would be that I want to do some sort of exercise for 10min 1-3 Times a week.

M- Measurable – This means how you are going to measure your accomplishments and how you will know when this goal has been achieved. For example, if your goal is to make $10,000, make sure you have a time frame. I want to make $10,000 by December 31 so it is measurable.

A- Achievable – Make sure you set goal that are achievable and not so far in left field that it will never happen. (For example, don’t set the goal to run a full marathon in three months when you can’t run 100ft currently. A more achievable goal would be to say you will walk/run a 5K by the end of summer.)

R- Realistic – Make sure your goal is something you can actually do. For example, setting a goal to become president of the United States for most people would not be realistic. A goal of become a local representative or sitting on city council. That would be more realistic.

T-Timely- This one is the easiest. Simply when do you want to accomplish your goal? One month? Three months? A year?

I’ll give you an example of a smart goal. I want to start exercising 1-3 times a week for at least ten minutes, by doing yoga or walking in the house (too cold right now to be outside). I want to be doing this in full by March 1st!

That is just an example. But I have several long term and short term goals that I will be working on. Another bit of advice I have for you is to write your goals in a place you will see them. For me, my goals often are out of sight out of mind. So I will write them on a dry erase board that I see every day. You could even write them on a mirror you use everyday. Just put them somewhere so you can be reminded of them daily.

I can’t say that I’m sad to see 2017 go. It was one of the harder years I’ve had with all the health issues I have had. And losing the ability to drive due to my health has really been hard. I feel like I’m 15 again and have to ask someone to take me everywhere. I know many of you have had a rough year as well so we are going to take 2018 and make it ours. I am going to do everything in my power to make this a positive year both with my business, and in my personal life. And I encourage you to do the same!!! Set goals, and use them as a point to work toward. I feel like if we don’t have something to work toward we become stagnant. For us spoonies it is so easy to focus on the negative. We have so many bad days and get bad news often. But if we can focus on something positive, Life might be a little more positive. I know you are thinking that it is easier said than done, but it will really make a difference. I will be honest I get stuck one the bad things all the time. But this year I am going to work on being positive!!! And I am here to help you with your goals if you need me to and help encourage you along the way!!

Feel free to share some of your goals in the comments. If you share your goals with others I feel that you are more likely to work to accomplish them! So share with us!! I hope and pray that all of you can make 2018 a positive year!

With Love,

Amber

Tips on Treatments for Migraines.

I by no means am an Expert on Migraines. But I do feel that I know quite a bit about treatment options for migraines as I have tried just about EVERY treatment known to man to get rid of mine. So today I will talk about possible treatment modalities for migraines, oddly enough while suffering from one of the worst migraines I have had in the last few weeks. But our world goes on right? From having so many I have learned that our world just can simply stop just due to a migraine. Do I do all I can to slow my world down during one? YES!!! We all have to do what works best for us to keep our world going. The things I am going to talk about are things that have been recommended to me by Medical PROFESSIONALS, and any thing I discuss should not be started into your regimen without the approval of your medical provider. This may be a little long but I get asked several times a week about what I do to treat my headaches and all of this has been or is currently part of my headache journey.

  1. Pain relievers like Aspirin or ibuprofen (Advil, Motrin IB, others) could potentially help relieve mild migraines. Tylenol can also work to help the mild migraines in some people, especially in the population of people who are on Blood Thinners and can not take medications like Aspirin or Advil.
    There are medications on the marketed that are specifically for migraines, such as the combination of acetaminophen, aspirin and caffeine which is known as Excedrin Migraine, these could potentially ease moderate migraine pain. However, none of the over the counter meds will be effective on their own for a severe migraine. And with many of the over the counter meds like Aspirin, Advil, Ibuprofen if they are taken too often or for too long at one time it is possible for them to lead to bigger problems such as stomach ulcers, GI bleeds and even Medication overuse headaches.
    There is a prescription pain reliever called indomethacin that may help diminished the effects of a migraine and is available in suppository form (not fun I know!!!), which may be helpful if you’re nauseated. Narcotic pain medications are rarely ever used in migraine treatment simply because many Providers feel like narcotics will cause rebound headaches in the long run and cause more problems than good, which is controversial to many, So I won’t go into it any further at this point
  2. If over the counter meds don’t work for you migraine than the next step is usually a medication group call The Triptans, which often used in treating migraines. Triptans make blood vessels constrict and block pain pathways in the brain. You have probably heard of them, they are medications like Imitrex, Zomig, Relpax. Triptans effectively relieve the pain and other symptoms that are associated with migraines. They are available in pill, nasal spray and injection form. The fact that they offer different forms is helpful due to the fact that if you are vomiting it is hard to keep down a pill for said migraine.
  3. If the Triptan class of drugs do not work to control your headaches and you are having to take them more than a couple times a week it is time to call your Provider again. At this point they may talk to you about how often your headaches are happening and if you have been able to pinpoint a cause. If no cause has been noted they mas discuss with you about doing some imaging like CT SCAN or MRI just as a precaution to rule out anything further that could be causing your migraines.
  4. If you have vomiting with your migraines, first let me say how very very sorry I am! I have terrible nausea and vomiting with mine. And thankfully my Providers have been nice enough to prescribe me anti-nausea meds to help when or should I need it, so don’t be afraid to ask!!
  5. Another kind of medication that your Provider may discuss putting you on if the Triptans and Over the counter meds like Aleve are not helping with the migraine is what they call Preventatives. These are medications that you take daily to help prevent your headaches from getting to the point of a migraine. However, there are requirements one must meet in order to be considered for a preventative med, which I will list below. Taking preventative medications can help to reduce the frequency, severity and length of a migraine and couple potentially increase the effectiveness of other meds used to relieve symptoms during attacks.  These medications will not take effect overnight it can take several weeks to see results. It could be recommended that you take preventative meds daily or just around your triggers. For instance if you get migraines around menstruation you might take the medication just around that time of the month for you,. Eventually if you have good results on the preventative meds your doctor may discuss tapering you off the medications to see how your headaches do without the medications.  The most common classifications of medications used as Preventative meds are Cardiovascular (heart) Medications, Antidepressants and Seizure medications. The qualifications I mentioned above are:
    1. You have four or more debilitating attacks a month.
    2. If attacks last more that 12 hours.
    3. If pain-relieving medications are not helping.
    4. If your migraine signs and symptoms include a prolonged aura or numbness and Weakness
  6. The last prescription medication I will discuss is Botox. I know you are thinking, “Wait, isn’t that the stuff that people put in their faces so they can’t move them and get no more wrinkles? Yup, same stuff! Just works a little different. I have yet to find an exact explanataion as to why it works but it does. There are some terms that have to be met before you can sign up for Botox. Here is what the Botox website says “BOTOX® is a prescription medicine that is injected to prevent headaches in adults with Chronic Migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years or older.
    It is not known whether BOTOX® is safe or effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).
    BOTOX® prevents on average 8 to 9 headache days and migraine/probable migraine days a month (vs 6 to 7 with placebo) after 2 treatments (at 24 weeks).”Botox website
  7. Some over the counter supplements that are often encouraged for migraine sufferers are Fever Few, Magnesium and B12, B6 and Folic Acid. Fever Few which is known as a herb used to control the pain of migrain. While Magnesium is used in hopes of preventing migraines. Some research has shown magnesium levels in the brain if often low during migraine attacks. And because magnesium is needed for a persons nerves to function properly, some think that low magnesium and migraines are somehow related. Vitamins B6, B12, and folic acid have been found that they  may reduce the frequency, severity and disability of migraines, according to new research. Daily vitamin supplements were found to produce a two-fold reduction in migraine disability.
  8. Invest in GOOD DARK SUNGLASSES- This may sound silly but you can never had dark enough sun glasses when you have migraines so invest in a good pair that is super dark and will really shield your eyes. There are multiple places to buy these but there are four good pairs on Amazon ranging in price from $49.99- $99.99, and are available as indoor and outdoor lenses!!!
  9. Another item that you can’t go wrong with and would be a great Christmas gift would be a good EYE MASK!!  These like anything vary in thickness and size and in bandwidth. You can find them at many different locations from the pharmacy to Amazon to Bed, Bath and Beyond,. The one below Is one that I recently purchased from Amazed that is desidned for those of us with migraines and has the ability to be frozen. And was only $10.
  10. If I had to pick one non-pharmacological item that has helped me the most it would be my ICEKAP!!! It is exactly what it sounds like. I hat with ice. But the ice packs are spaced properly so you don’t have to try and keep one on the front of your head and the back and keep them from sliding, It has really been a game changer. The Icekap website And last but not least Peppermint Oil. I am not big into oils but this is one things that I can carry in my purse and use anywhere when I feel a migraine coming on. And it also works for nausea. So killing two birds with one stone so to speaks with one oil. Unlike many of the other things that I have talked about. The more well known companies are the best to buy for like Young Loving because you know that their oils are 100% pure.

I hope that you find this list helpful and maybe I was able to give you a tip or two that you had not tried before. If you have any questions or comments or suggestions please don’t hesitate to leave them below!!

With Love,

Amber

5 Quick Tips to Avoid Illness During Cold and Flu Season

Yes, it may be fall and almost the holiday season. But with those wonderful things also come the bad! Bad for immunocompromised individuals that is. What am I talking about you might ask?!? Cold and Flu season!! For those of us with little to no immune system this can be the worst time of year. As all the germs running rampant make it hard for us to leave the house!! But there are steps we can take to try to prevent getting sick. They may not all be pleasant but if it keeps me out of the hospital I’ll do just about anything.

1. GET A FLU SHOT – The first thing we need to do to prevent the Flu is to get the Flu shot. Now I know not all of us can take the flu shot due to allergies or sensitivities, but those who can should. Some say that the flu shot makes them sick and while that may be true in a few cases, it will not give you the flu. We should also encourage those who we are in close contact with to also get the flu shot. If those we live with and work with don’t get the shot we can still be at risk for getting the Flu.

2. WASH YOUR HANDS- The next best thing we can do to prevent the nasty cold and flu bugs from getting us down is to wash your hands. Wash, wash, wash!!! When should we wash you ask? Well, we should wash our hands after using the bathroom, especially public bathrooms! (Also while I’m on the topic of public bathrooms, you should do your best not to touch the sink knobs or door handle after washing and should use a paper towel to do so!) We should also wash after sneezing or coughing on our hands. As well as after contact with surfaces that others may touch like door knobs, shopping carts etc. If you are unable to use good ole soap and water, use an alcohol based hand sanitizer until you can get to a sink.

3. AVOID CROWDED PUBLIC PLACES- We can also try to avoid going out into public at the peak times. The more people confined into a small space the more likely you will be to get sick. So try to go out first thing in the morning or last thing in the evening!

4. AVOID SICK CONTACTS- We should ask that our friends and family stay away when they are ill. If they know they are sick they should limit contact with those who are immunocompromised! And if they have to be near it is okay to ask them to wear a mask.

5. WEAR A MASK – We can also wear a mask when we go in public. It may not be pleasant or comfortable but it’s another way that we can prevent illness and hospitalization!

Prevention is important for those with low immune systems as well as those who don’t! When it comes down to it sometimes there is no way to prevent illness this time of year. But these five basic tips are quick and easy ways that we can implement to try to prevent contracting an illness. We have to do all that we can to prevent illness because no one else is going to do it for us!! We have to take prevention into our own hands and do all we can to keep ourselves healthy. We all need to do our part to stay healthy!

Gift Guide For The Chronically Ill

Christmas time is upon us and gift buying is always a struggle. Not just for us, but also for those who are buying for us. So I took some time and put together a gift guide for those struggling with chronic illness!!

I’ve chosen everything that is under $75.00, and can all be found either on Amazon or online. I will let you know where each item can be found.

First let’s start with one of my (and my fellow spoonie friends) favorites.

1. The Throw Blanket – Not only is it gorgeous, but it keeps us warm. This specific blanket comes in 24 different colors and is available in Twin and Throw size!

Where can I find it: Amazon.com

Price: $23.99 – $29.99

One of a Spoonies biggest problem at night is not being able to get comfortable. So the next item helps with just that.

2. The U-Shaped Body Pillow – this pillow will provide comfort and support for all parts of your body. (Yes, it also works during pregnancy)

Where can I find it: Amazon.com

Price: $42.95

3. The Heated Throw

Along that same line here is a great option for a heated blanket that does more than keep us warm. It will help tremendously with pain.

This specific Throw is a best seller and Sunbeam is the best selling manufacturer. This model is comes in multiple colors and has a lighted control

Where can I find it: Amazon.com

Price: $34.99

This is another option for a heated blanket. This one pictured is twin sized (however you can find them in queen and king size as well) and is perfect not just for you. This option (in twin size) will also be a hit with your spouse if they don’t want to sleep with a heated blanket. It features a foot control and an automatic 10 hour shut off.

Where can I find it: Amazon.com

Price: $52- $62

While we are on the topic of heat. Let’s take a look at a heating pad.

4. The heating pad- these are good when you have an area that needs heat but you don’t want to lay under a full sized heated throw.

Where can I find it: Amazon.com

Price: $16.37

There is nothing better than a soft and comfy robe to wear around the house. Which brings us to our next gift idea

5. Robe – This is a microfiber fleece hotel spa robe with pockets. This particular robe is One Size Fits All and comes in 10 different colors.

Where can I find it: Amazon.com

Price: $34.89

Another great idea for Spoonies is the perfect pair of lounge/ sweat pants/leggings. It’s important that nothing is too tight, because depending on the condition tight clothes can make things worse.

Leggings are a big hit among most Spoonies bc they are soft and feel good on the skin.

6. Leggings – these come in 10 color options and have a 4.5 start rating.

Where can I find it: Kohl’s/Kohl’s.com

Price: $14.99 (currently on sale from original price of $20.00)

Women’s Plus Size Leggings also at Kohl’s on sale for $17.99, regular Price $24.00

Spoonies in general deal with being cold and having cold extremities. So the next item is perfect for that

7. Warm Socks- This specific item is a 5 pack of thick knit wool. They come in 6 different color options.

Where can I find it: Amazon.com

Price: $12.99

8. Maybe my most favorite item on the list. Bath bombs!! These particular Bath bombs come in packages of six, are Vegan and made with essential oils.

Where can I find it: Amazon.com

Price: $17.95

9. Foot Spa – This vibrating foot spa comes with foot controls, so there is no bending over to turn it on and off. And comes with one attachment. And it’s just what your feet nee after a long day!! These are also great to use if you are doing home pedicures with the kids or young adult in your life.

Where can I find it: Amazon.com, Walmart

Price: $17.69

The next item goes right along with the previous two. But this not only feels good but it helps to ease sore muscles.

10. It may not be a fun gift but it’s practical. Epsom Salt makes taking a bath when you are in pain so much more pleasant. Always a good gift for a spoonie.

Where can i find it: Amazon.com, Walmart it most pharmacies.

Price: $15.99 (However, prices will vary depending on kind, size of bag and where it is purchased.)

Now that we’ve covered the big items, let’s talk about a few stocking stuffers.

11. Adult Coloring Book- Who doesn’t love to color and it’s been proven that it’s a good way to relieve stress!!

Where can I find it: Barnes & Noble, Walmart, Amazon, most book stores

Price: $8.99

If you are buying an Adult Coloring Book then the next item is a MUST HAVE!!

12. Markers!! You have to have a way to color your book and these dual tip brush pens are AMAZING!!

Where can I find them: Amazon, Walmart, Art Stores, any where markers are sold.

Price: $12.99

**the set pictured is found on Amazon**

13. Mani Moo Hair Ties- These hair ties are no crease and no pain. So if you have someone in your Life with headaches these are a MUST have!!

Where can I find it: Amazon.com

Price: 10.00/6 Hair Ties

14. Gift Cards: Gift cards are always a good stocking stuffer. Whether they are to A store or a restaurant, they will give your friend or family a good reason to get out of the house!!

Where can I find it: Any store, restaurant or online shop!

Price: Varies

When you have a lot of pain in your hands and use your phone a lot this next item is a MUST!

15. Popsockets- Not only do these make it easier to hold your phone when your hands hurt. They also make great stocking stuffer ideas. They come in all kinds of designs and you even have the option to create your own!!

Where can I find it: Popsocket.com, Amazon, and many other retailers.

Price: $10-20

16. The Eye/Sleep mask- This will be a great gift for anyone with migraines or who just have problems sleeping. I provided two price options for this gift.

1. The Spa Collection Mask is a great gift bc it allows for heat or cold to be an option. It also comes in two colors.

Where can I find it: Bed Bath and Beyond

Price: 24.99

1. This option is just the plain basic option but completes the same task of keeping the light out of ones eyes. I find it helpful to keep one like this in my hospital bag in case I lose it.

Where can i Find it: Bed Bath and Beyond

Price: $6.99

I hope this gift guide provides you with some ideas for your Chronically Ill friends or family. May you all have a Merry Christmas and happy shopping!!

Amber

10 Ways to Survive The Holidays With Lupus

We’ve made it through Halloween and it’s almost the holiday season again. For most it’s a joyful time, but for those with chronic illnesses it can be quite the opposite. It can become a time of worry and planning. Planning how to make it through all the parties, the cooking, the crowds etc. A time of worry about the germs we will be exposed to, if we will get sick, when we can squeeze in naps, and how far in advance we can prepare dishes so we don’t have to do marathon cooking! The holidays are just plain exhausting, and for many don’t carry the excitement that they once did.
So what can the chronically ill do to make it through the holiday? It depends on the person and what illness they deal with. That being said the following is a general list of things we can do to get through this season.
1. PLAN AHEAD- One of the best things we can do to get through this season is plan ahead. Know what you have when and plan accordingly. If you know you have events several days in a row or an event that is long you can plan the remainder of your week so you can rest. You can move your schedule around so you have plenty of down time so you have the energy to get through your events.
2. TRY TO STAY AWAY FROM THOSE WHO ARE ILL- I know this is much easier said than done. But it is essential to getting through the holidays without getting sick. It never fails We go out shopping or to a party and come home sick. So don’t be afraid to wear a mask when leaving the house. I know you feel like you stand out and you get stared out. But really it’s for Your Health!!
3. REST, REST, REST- I touched on this above but to make it through the holidays rest is going to be essential. Between the cooking and the shopping and the parties if we don’t rest we won’t make it through the season unscathed and somewhat healthy!!
4. DONT FEEL LIKE YOU HAVE TO ATTEND EVERY EVENT YOU ARE INVITED TO- It never fails that during the Holidays there will be tons of events and people who want to get together. And that’s great and grand. But not at all plausible. So pick and chose the most important ones and decline the others. People will understand!
5. IF YOU ARE HOSTING A PARTY OR DINNER, DELEGATE! – There is absolutely nothing wrong with asking others to bring side dishes or dessert. Ask someone to come over before to help you, and start the party early!! Also try and plan dishes that can be made ahead of time and refrigerated or placed in the freezer till right before the event! Don’t be afraid to ask others for help to clean up!!! You don’t have to be the Lone Ranger! It’s okay to ask for help!
6. DO SOME OR ALL OF YOUR SHOPPING ONLINE- In order to conserve energy and preserve your Health do your shopping online. There really aren’t many things you can’t buy online. And most places will even do your gift wrapping for you!! Online shopping is the perfect way to shop for those of us chronically ill. If you are worried about additional costs, the prices are the same as in store, and with a few Google searches you can normally find an additional online coupon code to take a percentage off.
7. PLAN THE BEST TIMES IN THE STORES!- If you are a person that prefers to shop in the store or have an item that is only found in stores, that’s totally understandable. That being said try to pick the best times to be in the stores. Meaning when the crowds aren’t as heavy and the parking lots aren’t full. These times are generally first thing in the morning when the stores open or right before they close. If you have to be in the stores try to get to it before the huge crowds appear in the weeks immediately leading up to the holiday. Don’t be that person fighting the crowd on Christmas Eve.
8. STAND UP FOR YOURSELF/DONT FEEL BULLIED- Plain and simple you just can’t do it all. There is no way that you will be able to attend every party or gathering, do the cooking, the shopping etc. so stand up for you and what’s right for your body. And don’t let anyone bully you into changing your mind when you know it’s wrong. They don’t have to live with the consequences of pushing yourself too far.  So do what you know is right and feels right for you!!
9. BE WISE IN YOUR CHOICES OF FOOD AND DRINK! The holidays are known for being a time in indulge, or over indulge for many on all the great foods we don’t have all year. It is also time to be merry and have an adult beverage to celebrate. That being said if you know eating certain foods or drinks are going to make you sick be careful. No matter how good it may look and smell it’s not worth the result they may cause.
10. Last but definitely not least. FIND TIME TO TREAT AND PAMPER YOURSELF- I know the Holidays are meant to be a time of giving to others, but you need a treat now and then too. The stress of the Holidays and others attitudes can really bring a person down. So take sometime in the coming weeks to do something for you once a week. Whether that’s soaking in a hot bath, or getting a massage, or something a simple as curling up for the evening to watch a favorite Holiday movie. DO IT!! You’ll thank me later.
These are just 10 simple ways to make this time of year a little easier on the Chronically Ill. These are things we all may struggle with but we need to really focus on during the Holidays to help us make it through as healthy as possible. No one wants to be down and out while everyone else is celebrating. Personally I love a good hot bath with a good bath bomb. Or reading a good book or watching a movie and just relaxing with my heated blanket!!
May you all have a Happy Holiday Season and hopefully you will find these tips helpful.
Happy Holidays!
Amber

Medical Research with Antidote

Medical Research is a topic I know I can’t be the only one interested in. Sadly, when you have chronic illnesses like I do, you hope and pray for medical research to be conducted on your conditions. Without medical research, many of us wouldn’t be able to live the lives that we are living. For me and many other Lupus patients, Benlysta (Belimumab) has given us part of our lives back. Without this med I only have a few GOOD DAYS a month, but with it, I have several GOOD WEEKS!!! Lupus isn’t the only condition that benefits from medical research. Any long term illness including, asthma, heart disease, migraines, diabetes, other autoimmune disorders besides Lupus and other conditions like cancer or Alzheimer’s benefit from ongoing research! Benlysta was approved in 2011 after going through many trials and final approval by the FDA. Most recently after trials and research, Benlysta was released in a injectable form that can be given at home which will further imorove peoples’ lives. 
So what exactly is medical research?According to The Nature journal, “Medical research involves research in a wide range of fields, such as biology, chemistry, pharmacology and toxicology with the goal of developing new medicines or medical procedures or improving the application of those already available. It can be viewed as encompassing preclinical research (for example, in cellular systems and animal models) and clinical research (for example, clinical trials).”

Many people struggle to find medical research and clinical trials for their conditions and often have difficulty understanding them due to the complex medical language used. Depending on a person’s condition & location, finding a local trial can be difficult. However, I have recently found and partnered with an AMAZING company, called Antidote. Antidote works to help patients get connected with clinical trials and provides easy to understand descriptions of each trial without all the medical jargon. They have a very easy search function on their website where you search for your condition, provide your location and indicate how far you are willing to travel. The site will then provide a list of open trials for that condition. Currently, there are 69 open trials nation-wide for Lupus alone. Once you put in how far you are willing to travel, the site asks you basic questions to try and connect you with the best trial for you! 

The best part is that this is a free search. There is no cost to search for trials for your condition and if you have multiple issues you can search for multiple trials. If you get accepted into a trial you would only be allowed to do participate in one trial at a time. 

Being part of a trial does seem scary and does have its risks like almost all things medical. Despite this, it is imperative that people participate in this kind of medical research. Without clinical trials, the world of medicine would not advance and treatments would stay the same as they have been for years. If you feel called and there is a trial near you, please at least apply to see if you could benefit from participating. Not everyone who applies for a trial will get accepted, however. I was curious as to how many people would be willing to partipate in research, so I asked a generic question to my Lupus Support Group, “If you had the option to join a clinical trial, would you?” The responses varied. Of the 27 people who responded, 22 stated that they would participate, while the remaining 5 said they would not participate. The biggest reasons reported for not participating in a trial were that it is scary/dangerous, and the amount of time and needles (for IVs or blood draws) involved. 

If you are interested in medical research and write a chronic illness blog and might be interested in partnering with Antidote, please contact me. I have just began a partnership and would love to get the word out and get others involved. I know what you are probably thinking. And the answer is NO! I do not receive any commission or payment of any kind for referring other bloggers or recommending people use the search tool! I am just truly excited that there is a tool like this that exsists and is available to everyone. They may not have your condition listed but they are working on finding more trials for more conditions. I am so excited to share this information with you and as I learn more I will continue to pass along information. If you would, please share this information with people you know or with your communities. We must get the information out about the need for more involvement in medical research so we can advance treatment of chronic conditions!!! If you would like to check out the search tool or the website for my information I will list the website below. You can also find the link on my sidebar within the blog. Soon I will also be adding a page focused on current trials available for conditions I currently have. 
ANTIDOTE WEBSITE: https://www.antidote.me/

LIST OF CONDITIONS: https://www.antidote.me/
Amber 💙
Other References:

https://www.nature.com/subjects/medical-research

Dysautonomia- The In’s & Outs

October is Dysautonomia Awareness Month. What is Dysautonomia (can also be called Autonomic Dysfunction) you might be asking?? If you look it up you can find all kinds of information. According to Dysautonomia International, dysautonomia is a very broad term that causes a some sort of malfunction of the Autonomic Nervous System(ANS). Let me pause here and explain what what the AND does so you can have a better idea of what problems could arise. The ANS Controls the body functions that would be considered “automatic.”  So things we can’t actually control ourself. Things like our heart rate, blood pressure, digestion of food, constriction and dilation of the pupils, kidney function, and our body temperature. Anyone who has Dysautonomia may have trouble regulating the above. So their blood pressure and heart rate may fluctuate and could potentially cause fainting, lightheaded, malnutrition or even death. 

If I were to ask 10 people if they heard of Dysautonomia, I would guess it would be less than 5. That being said Dysautonomia is far from rare. It is said that over 70 MILLION people world wide live with this in some form. This condition is not gender or race specific. Anyone of any race, gender or age can be impacted.  Sadly, like many conditions that we apoonies have there is no cure. However, research is being funded to research and hopefully develop new and better treatments, and hopefully someday a cure. Sadly even though so many people are impacted by this condition, just like many spoonie conditions, it may take years to be diagnosed. Simply because of lack of awareness not only among the public but also within the medical profession   

Dysautonomia will generally involves failure of the sympathetic or parasympathetic systems. Causing excessive or even overactive ANS actions. Dysautonomia can be localized leading to reflex sympathetic dystrophy. Or more ge realized, causing pure autonomic failure. It can also be acute in action and therefore reversible , like Guillain- Barre. Or progressive and chronic like diabetes and alcoholism. Being that it’s a very complicated condition it can also happen as a primary condition, or along side with degenerative neurological conditions like Parkinson’s. Predominant signs of dysautonomia caused by sympathetic failure are impotence in men, and a drop in blood pressure when standing!! On the other hand if the patient is experiencing excessive sympathetic activity may have or show high blood pressure and:or a fast heart rate!!  Primary dysautonomia is  usually inherited or due to some sore of a degenerative disease, while secondary dysautonomias usually results from another condition or injury.

So we’ve talked about who can be effected by Dysautonomia/Autonomic Dysfunction acute vs chronic conditions. And what those conditions might look like. Now let’s look at signs and symptoms. 

Autonomic Dysfunction have the potential to affect only a small part of the ANS or the entire ANS. Symptoms may vary depending on how much of the ANS is affected and if there are any nerve disorders. 

Generic Signs and symptoms of Dysautonomia: dizziness and fainting upon standing up, (aka orthostatic hypotension), an inability to alter heart rate with exercise, or exercise intolerance. sweating abnormalities, which could alternate between sweating too much and not sweating enough, digestive difficulties, such as a loss of appetite, bloating, diarrhea, constipation, or difficulty swallowing, urinary problems, such as difficulty starting urination, incontinence, and incomplete emptying of the bladder, sexual problems in men, such as difficulty with ejaculation or maintaining an erection, sexual problems in women, such as vaginal dryness or difficulty having an orgasm, loss of vision problems, such as blurry vision or an inability of the pupils to react to light quickly. 

Anyone can experience any or all or none of these symptoms depending on what the cause. Symptoms such as tremor or muscle weakness may occur due to certain types of autonomic dysfunction.

There are three main types of Dysautonomia: 

Neuro Cardiogenic Syncope (NCS) is the most common kind of dysautonomia. It is estimated that tens of MILLIONS of people are affected worldwide. The main symptoms a person with this condition might feel would be: fainting (or syncope), which may happen once or it could be happening frequent enough that it would interfere with a persons daily life! 

Naturally gravity will pull blood downward  but a healthy ANS adjusts the heartbeat and muscle tightness to prevent blood from pooling in the feet and legs and makes sure blood flow returns to the brain.  Most treatments are aimed to reduce symptoms. 

For people who faint they should avoid the following triggers. 

-dehydration, stress, alcohol, very warm areas, tight clothes. 

Meds like beta blockers and pacemakers are often used to treat people with severe NCS. 

Postural OrthostaticTachycardia Syndrome: This conditions is also known as POTS and affects between 1 and 3 million people in the US alone. Approximately 80% of those 1-3 million are female. IT COMMONLY AFFECTS PEOPLE WHO ALSO HAVE AN AUTOIMMUNE CONDITION!!!!!

Symptoms can include:
lightheadedness and fainting, tachycardia, or abnormally fast heart rate, chest pains, shortness of breath, stomach upset, shaking, becoming easily exhausted by exercise, over-sensitivity to temperatures

POTS is usually a secondary dysautonomia. Research has found high levels of auto-immune markers in people with the condition, and generally patients with POTS are also more likely than the general population to have an autoimmune disorder, such as multiple sclerosis (MS) or lupus! 

Apart from people who have POTs having  auto-immune factors, other conditions that have been linked to POTS or POTS-like symptoms include: some genetic disorders or abnormalities, diabetes, Ehlers-Danlos Syndrome, a collagen protein disorder than can lead to joint hypermobility and “stretchy” veins, infections such as Epstein-Barr virus, Lyme disease, extra-pulmonary mycoplasma pneumonia, and hepatitis C, toxicity from alcoholism, chemotherapy, and heavy metal poisoning, trauma, pregnancy, or surgery

Research for the causes of POTS is continuous . Some scientists believe it might be due to a genetic mutation, while others think it is an autoimmune disorder.

Lastly, (for the purpose of this post) 

Multiple system atrophy- Multiple system atrophy (MSA) is less common than POTS and NCS. One of the big difference in this conditions and the others discussed is that  It is more likely around the age of 55 years. Even though it is less common MSA is estimated to affect between 2 and 5 people in every 100,000. It is oftenhard to diagnose because it is often mistaken for Parkinson’s disease because the early symptoms are similar. In the brains of people with MSA, causes certain regions slowly break down, in particular the areas of the cerebellum, basal ganglia, and brain stem. The break down in those areas leads to motor difficulties, speech issues, balance problems, poor blood pressure, and problems with bladder control.

MSA has not been found to be hereditary or contagious, and it is not related to MS. Researchers know very very little about what may cause MSA. As a result of not knowing the cause, there is no cure and no treatment to its slow progression. Treatment can, however, manage specific symptoms through lifestyle changes and medications.

As you can see Dysautonomia is very complicated and can impact many parts of the body from the heart to the brain. While some of the conditions that fall under this umbrella are well known with good treatment options.  Others, mainly MSA is very unknown and there is no cure or treatment.  Especially important to us is the research of POTS as is directly related to autoimmune like lupus. And many people with Lupus end up having POTS. Like many other conditions we need to do more research and find good treatment options for all these conditions!!
References:

http://www.dysautonomiainternational.org/page.php?ID=34

https://my.clevelandclinic.org/health/articles/dysautonomia

https://www.healthline.com/health/autonomic-dysfunction

https://www.medicalnewstoday.com/articles/76785.php

Dealing with Social Isolation

When you read the words social isolation what is the first thing you think of?  Is it Tom Hanks being stuck on a deserted island and resorting to talking a volleyball to not go nuts?  Is it those poor old people who live by themselves and have no friends or family to ever come see them? According to free dictionary.com – social isolation is the process of separating, or the state of being alone.  So this could be taken in several different ways.  Anyone can suffer from social isolation. 

When you are chronically ill you often suffer from many kinds of isolation. You are feeling isolated from the world because you don’t leave the house often due to not feeling well and for fear of getting sick. You may also feel religious isolation because you can no longer regularly attend church like you once did. And you feel like you are isolated from your church family. Probably the most common type or feeling of isolation is the feeling of isolation from your friends and family. Also known as social isolation. Due to the fact that you no longer feel like doing the things you used to and you often times end up cancelling plans. And once you start cancelling plans much of the time people will stop asking you to do things. Because they just assume you’ll say no. And possibly because they assume you just don’t want to spend time with them when that’s so very far from the truth. 

“Belonging” is a complex social concept, relating to people, places, and things. It is fundamental to our emotional well-being, helps define us, and keeps us connected. Social isolation, on the other hand, is when you distance yourself, physically, psychologically, or both, from your network of needed relationships.When you have a chronic illness, isolation can have unforeseen consequences, including worsening symptoms, unexpected health crises, hospitalization, loss of interest in activities, and decreased levels of energy. Anyone living with a long-term health condition is at risk for social isolation.” Upwell.com

I asked the members of Lupie Groupies (the Facebook support group I am administrator of) about their thoughts and feelings on isolation. Below are what they had to say. 
This fellow spoonie said “The only time I feel the isolation is when I’m feeling better. Otherwise to be honest I’m just to sick to care. If I am lonely or bored it means I’m improving ( which hasn’t happened in awhile).”  Which made me think. She is so right. It’s when I feel better that I start noticing my feelings of isolation because I feel like getting out of the house and doing things. Whereas when I’m sick the last thing I’m thinking about is leaving the house to hang out with friends.”

Kim had this to say “I too generally feel more isolated when I am feeling better. However, these past few weeks have been the High Holy Days for our Faith and I have not been able to participate either because I have been too weak or in the hospital. This is really hard on me as my faith is very important me. I have not been to services in a while because of my fatigue and pain. These issues just aren’t going away either. I also don’t see many people on a regular basis either due to illness except family. When I am doing better this can be upsetting at times. I am an outgoing person with a heart for people. The friends I have do which are few have been my friends for 30 years and we are more family now than anything. They have stuck but others have not because I cannot be there to go out to lunch or just hang out. I cannot say with any certainty that I will available for them. My body doesn’t allow that.”  She touched on many of the types of isolation I talked about up above. And I appreciate her openness and willingness to share. 

Elizabeth had this to say,  “I’ve been fortunate to have a long stretch of time that I was doing very well and was able to do things with a lot of people. Now I’m falling apart again, Benlysta stopped working, I HURT all the time, etc. I’ve had to cancel so many plans that I’ve had for quite some time and any time I allow myself to think about it I start crying. The internet is good for kind of talking with people, but on the other hand it sometimes hurts to look at Facebook and see life going on without you. And they should live their lives, I get that, but when living my life equals sitting around in pain it’s rough. So yes, social isolation for me is the worst right after a feeling great period because I’m having to say no to so many things I enjoy and then watch others have fun without me.”  She makes a great point about the internet. It’s a great tool for finding support groups and friends suffering with similar conditions. And finding people to talk to who share your feelings. However, it can also be a negative experience when you see all the fun things and vacations and such that your friends are doing and you aren’t able to. 

There are ways to combat feelings of social isolation. Upwell.com have five things that can be done to combat those feelings. They are listed below. 

Five ways to keep social isolation from taking over your life

1. Do your research. People often struggle with what they don’t know. Invest time in learning about your illness, symptoms, and treatment options so you do not fall prey to the emotional difficulties of illness, including the desire to be alone. By being proactive, you can understand triggers and keep isolation from taking over your life.

2. Participate in e-social activities. We are blessed to live in an age where social networks make it easy to reach out to others. These are especially helpful when illness and pain prevent us from leaving our homes. Many different e-social activities, including email and instant messaging, give you an opportunity to stay connected daily. It does not matter whether you are reaching out to friends, family, or online acquaintances; the important thing is that you are connecting and not struggling alone. 

3. Join a real life support group. Real life support groups are a great place for the chronically ill and isolated. They are a resource for information and emotional support, and they offer an opportunity to vent to people who understand. They are also an excuse to get out in the world. To find a local support group, Google a national organization for your condition, and then locate links on the page related to support groups or a local chapter. For example, the Arthritis Foundation has a local chapter search where you can find all the resources for your area, including real life support groups. Or, you can try the U.S. Department of Health and Human Services’ support group page.

4. Take part in the real world. There will be times when you struggle to take part in the real world—whether it is spending time with loved ones or focusing on your career perspectives. Participating in the real world keeps you from becoming isolated. It also keeps you enjoying life, making memories, and feeling positive in a life that isn’t necessarily easy. Let others know you can participate, and join in all the activities you reasonably can handle. Volunteer, join a book club, or meet a friend for coffee or lunch at least once a week.

5. Get comfortable with being alone. While it is important to have a network of people to relate to, there will be times when life requires you to be alone or when you simply want to be alone. Get comfortable being on your own. Learn to lead your own life and make your alone time productive and healthy. You can try meditating, writing, or reading to help you deal with isolation when chronic illness is dominating your life.   

Social isolation can be something that anyone can deal with. But those with chronic illness are more common to deal with these feelings. One of the ways upwell.com gave to help deal with these feelings is to find a support group. Support groups can provide you with information but they can also be a place to find friends and confidants in those who are dealing with similar conditions. If you don’t have a support group but are interested in finding one let me know and I can help you find one. 

Amber 

Reference:

https://www.upwell.com/articles/coping-and-support/manage-social-isolation-with-chronic-illness.html