Tips and Tricks for Traveling with Chronic Illness 

Traveling is hard no matter. Making sure you get to the airport and your gate on time. Plus, all the hard work you have to put in before getting to the airport. The planning, the packing! Not just clothes but medication. Where do you put those? How do you travel with them safely?  Then you add a chronic illness and chronic pain on top of everything and traveling seems impossible. There are ways and “tricks of the trade” to make traveling easier.  Let’s explore some of those to find out how we can make our next trip easier. 

If you plan ahead your trip can be pleasant and not hellacious like you expect. Here are some tips to make traveling with chronic pain easier. 

  1. Plan for a good time and to remember the good time that you had!  As you plan your trip look through travel brochures and websites to find things that you would enjoy. While you are enjoying your trip take lots of pictures, so you can remember the good times you had.  
  2. Make sure you get your supplements and prescriptions filled ahead of time. If you need any refills make sure to call your Doctor or Pharmacy 10 days before you leave. If you take prescription pain medications, you should check with the state you are visiting to know if any special arrangements need to be made beforehand for a refill so you don’t get caught with a shortage. If you need to refill them while you are gone. Most national pharmacy chains can refill your prescription at any location. But it’s always better to check before you leave. 
  3. Prepare to sleep with comfort. If possible it’s a good idea to carry a foam pad or air mattress to cushion unfamiliar beds. Also, take an extra sheet with you to cover the beds. 
  4. Don’t be afraid to ask for assistance.  If you know ahead of time that you need a room with a shower, or a room closer to the elevator, or someone to life your bag into the overhead bin. Ask for help! 
  5. Don’t get stiff –do your stretches. If you are doing a long distance by plane or car, you will probably going to be sitting extended periods of time. If driving, you should stop every two hours for a 10-minute stretching break. If you are on a plane, take a walk to the restroom as often as needed to keep you from getting stiff. You can also do  stretches in your seat. You can stretch your arms and neck wiggle your toes and rotate your ankles. Don’t forget to do your daily, stretches in the morning and before bed.
  6. Sleep is NOT overrated. Even though your trip may be jammed packed, make sure to get plenty of rest. Take naps during the day and put your feet up. You don’t want to get run down and not be able to enjoy your trip. 
  7. Your feet were made for walking, so take good care of them. Ditch the flip-flops and cute shoes and wear something comfortable. At the end of the day pamper your feet and soak them, massage and put lotion on them. 
  8. Rome wasn’t made in a day, so don’t plan on seeing it in a day. Take time to see the attractions. Don’t try to cram them all into one day. 
  9. Wash your hands, wash your hands, wash your hand!!!!

Here are some tips specifically for flying!

  1. Invest in luggage with wheels. 
  2. Pack light. 
  3. If possible try to sit on the aisle so you can move around more easily. 
  4. Dress in layers. 
  5. Stay hydrated. 
  6. Practice relaxation techniques during the flight to alleviate anxiety. 

So now we have explored ways to make your trip easier. Let’s explore the safest way to travel with prescription medication. Here are some tips to make traveling with medication easier. 
The TSA has strict guidelines about medications. So it’s important to know those guidelines so you can fly with no extra issues. Listed below are the guidelines as reported by USA Today. 

  1. Prescription Drugs Are Allowed. You may bring all needed prescription drugs with you on your flight. These medications include liquids, gels and aerosol medications. You can also bring eye drops, lotions and petroleum jelly.
  2. Declaration. The Transportation Safety Administration will not limit you on the number of prescription drugs that you bring on board with you in your carry-on baggage. However, if you bring liquid medicines that are not in bottles of three ounces or less or are not in a one-quart plastic bag must declare to a TSA security officers that they have prescription medication in their luggage. The prescribed medication is subject to being inspected before you and your medication can pass through  security.
  3. Non-liquid Medications. Travelers may pack non-liquid medications inside their carry-on luggage as well as in their checked baggage. The TSA recommends that travelers label their medications to expedite the screening process.
  4. X-rays. The TSA will usually X-rays medications and other medication-related supplies. You have the right to request that the TSA security officers visually inspect your medication instead of running it through an X-ray machine. During the visual examination, the TSA officer will ask you to show, handle and repack your own medication. If a medication cannot be visually okayed, they must go through the X-ray machine before you are allowed to pass the security checkpoint.
  5. Documentation. If possible, you  should have documentation you can show to TSA employees to help explain why the medication is necessary. It’s important that the name on a prescription matches the name on a passenger’s ticket, if these two names do not match, the traveler should be prepared to explain why they have this medication in their possession. 

Hopefully all of these tips and recommendations will make your next trip a little easier. And you can actually enjoy your vacation and not worry about the traveling itself. 

-Amber 

Resources 

  • http://www.fmcpaware.org/lifestyle-resources/travel-tips-for-chronic-pain-illnesses.html
  • http://www.apmhealth.com/blog/bid/403917/9-Quick-Tips-For-Flying-With-Chronic-Pain
  • http://traveltips.usatoday.com/regulations-flying-prescription-drugs-63014.html

My Story/Self-Advocacy

Self-advocacy is defined as the action of representing oneself or one’s views or interests.  Advocating for ones-self becomes imparitive when you are diagnosed with any type of Chronic Illness. It’s a dog eat dog world out there and sadly no one but you can ever truly stand up for what you believe in!! And to get the proper care and treatment for your condition. 

It’s just been in the last couple of years I have learned just how important this topic is.  I learned the hard way through years of drs appointments and tests and such that if I don’t stand up for me no one else will.  Here is my story. And my journey to advocacy/self-advocacy!! 

The last couple of years it seems like once winter hits I am sick ALL the time. Bronchitis every few weeks, sinus infections. All fun things. Since the end of December I’ve had Influenza, bronchitis twice, a sinus infection and now pneumonia. Damn low immune systems. I feel like if someone looks at me who is sick, I then get sick. I am so over it!! I just want a few weeks where I can breath, and not sick during the winter!!! Is that too much to ask? 

 Surprisingly, (or not really surprising As it takes forever to get diagnosed) I wasn’t diagnosed with my first autoimmune disease until I was 26. Looking back at my childhood and teenage years I was so sick all the time. I can remember my friends and boyfriend always asking me why I was sick ALL the time. My answer was always just “I guess I have a crappy immune system!” Little did I know it was really true. I can remember during my sophomore year being diagnosed with Mono and it lasted SIX months! Who has mono for SIX freaking months. Only me!! I also remember during that time having such bad pain in my arms and legs during that time. And was just told oh it’s probably just the Mono. Knowing what I know now that was my first real Lupus flare. Nothing was ever done to follow up on that and it was all forgotten. 
Also during my sophomore year in high school I also started having tremendous headaches that could last up to two weeks. Light sensitivity, sensitive to smells and noise. And again those were just brushed under the rug! Along with the constant belly pain I started having in 1999. They have checked my appendix so many times and it’s always fine. So I became best friends with Advil and the heating pad. At the time I was too young and lacked the knowledge to stand up for myself and really advocate for me. 
Fast forward many years and I landed myself in the hospital in Feb 2012 for a week. Once again another respiratory infection. But this one was different. It wouldn’t let go!!! I was in the ER two days in a row and they kept telling me it was just anxiety. But, the last day in the ER I said I wasn’t leaving until I saw a hospitalist and was admitted. And admitted I was!  They never could pinpoint a diagnosis, so I was discharged on high dose steroids for several months. As well, I was out of work for several months. And still no diagnosis. During this time somehow I was also diagnosed by interstitial cystitis. Which could have been some of the lower belly pain I was having. 

Finally, in June 2016 I had an ANA come back positive and was sent to a rheumatologist. Who finally diagnosed me with Lupus and Fibromyalgia!! It was scary but I was so very happy to finally have a diagnosis. It was at this point I learned about being a self advocate even more. The Rheumatolgist and I didn’t see eye to eye and I was forced to learn to stand up for me, in order to get the care and treatment I needed. If I didn’t advocate for myself I would have never gotten the treatment I needed. 

In November 2011 I was diagnosed with endometriosis by having surgery. This was the cause of my abdominal pain. Another time in my life I had to advocate for myself. The dr at the time didn’t want to do surgery and just wanted to continue on with birth control as treatment. But I was tired of living in pain and if having surgery could help I wanted it DONE!!!! The surgery did show my endometriosis and relieved my pain for about two years. I only got that surgery bc I advocated for myself!!
Fast forward again to Feb 2016, I had my first hemiplegic migraine and was hospitalized.  They thought it was a stroke and was treated as such. But they just continued to get worse and the symptoms intensified. All while my adrenal glands were slowly starting to fail, making everything worse. I was getting no answers at my local hospitals so I demanded a referral to Mayo Clinic. That appointment didn’t prove to be very helpful. And I was forced to quit my career to take time off. The last thing I ever wanted to do. But it was necessary. I listened to the drs and took six months to get better. And at this point I am better and trying to go back to work. 

Had I not stood up for myself over the years and demanded better treatment I may have never have gotten the treatment I got now. And now I spend time reminding others the importance of self-advocacy.  And providing them with information on how to do so.  

Here are Ten Tips to Self-Advocacy

  1. Believe in you. 
  2. Take time to research and learn your rights. 
  3. Make sure to bring up and discuss your questions and concerns. 
  4. Make sure that you are effective in your phone conversations. 
  5. Never hesitate to put your concerns into writing. 
  6. Get information about your conditions and decisions about your care in writing. 
  7. Use the chain of command when filing a complaint with your dr it the hospital. 
  8. Know your appeal rights and responsibilities!
  9. Follow up and say Thank You. 
  10. Never hesitate to ask for help. 

I hope that my story somehow inspires you. And you can learn a little bit about how to stand up for yourselves. 

To Cope or Not to Cope

We all have family, we can’t pick them. We are stuck with them. Sadly, though they are usually the ones who hurt us the most. Whether it be by not being supportive or by making snide comments about our illness. When they make rude comments about us being lazy or us not doing anything to improve our health, it is very hurtful and hard to take. That being said families of people with autoimmune issues also have a lot to deal with. Its not just the person with the illness that has to learn how to cope.  So, why do our families act the way they do? Do they not understand or do they just not care,  that is the real question. Do we need to education them more? Or will they ever understand? Its hard to say for sure. Some people will just never understand and we learn how to take it. All we can do is provide them with the best education for our situation as we can. What they do with it is there purgative. 

How do you define coping? Most would say it is how we face and deal with problems or issues that arise throughout our lives. It involves facing the problem head on and finding a way to deal with said problem. People who are diagnosed with chronic illness need the love and support of their family in order to cope successfully. That can be reciprocal, the families also need the love of the ill in order to cope. Many times people who aren’t coping can have trouble expressing their feelings and feel that they are out of control.  Which makes the situation harder on everyone.  So how do you go about learning to cope or educating our families to cope?  

Knowledge is power “A man of knowledge is reinforcing power” Proverbs 24:5. The first step in this process is to find a doctor that you can easily communicate with and who you find helpful.  One who doesn’t rush you in and out of his office and is willing to answer any and every question that you have.  The next step is to keep asking questions and be specific until you totally and completely understand your situation. One important thing to do during this step is to WRITE YOUR QUESTIONS DOWN!!! It is very hard to remember everything when you have such a short time with doctor. Next, it is very important that you inform your family as early as you can. The longer you wait the more they may feel left out. One of the most essential parts of coping is learning how to deal with and control harmful emotions.  It is really easy when emotions are high and raw for hurtful things to be said. 

There are somethings that should NEVER be said to someone with a chronic illness, and it never hurts to pass that information along to family members.  Things never to say:

  • But you don’t look sick!
  • You’re cancelling on me AGAIN?
  • I know how you feel.  (Unless you have a chronic illness YOU DONT KNOW!)
  • If you need anything, let me know! (Really!?! How many people actually follow through with that?)
  • If I could be sure your health would be OK by/for (fill in the date/ or occasion)
  • You can beat this! You will be back to normal in no time at all!
  • Should you be eating THAT?
  • I wish I could just stay home all the time.
  • God never gives you more than you can handle!

Our families should focus on the things we need to hear to better help us cope!  Things to say:

  • Tell me more- Ask how their day was or how they are feeling and then REALLY listen. 
  • I believe you – For most people sick or not validation is vital when dealing with something big. This is even more true for people with the Invisible Illnesses because the symptoms are invisible and they are struggling with a way to “prove” their illness. 
  • I support you- Many times people lose long time friendships and even relationships with their families when they become ill. So the more support the better!
  • I care about you and I’m here with you for the long haul.

Dealing with the diagnosis of a chronic illness and living with a chronic illness is one of the worst and hardest things a person can ever go through.  And we need all the support we can get. Whether it be from families, friends or support groups.  Do whatever necessary is to find people to support you.  I hope you find some help in this, and feel free to share this with family if you find it helpful 

-Amber

Resources 

  • https://themighty.com/2016/04/what-to-say-and-not-say-to-someone-with-a-chronic-illness/
  • http://wol.jw.org/en/wol/d/r1/lp-e/102000363#h=7
  • http://autoimmunewellness.com/5-things-say-someone-autoimmune-disease/

Ways to Stay Healthy During the Cold and Flu Season

The cold and flu season can wreak havoc on those of us who are immunocompromised and are taking immunosuppressants. It seems like everywhere you go there are people hacking and coughing, sneezing and blowing their nose. And of course they are NEVER doing so in a way that could protect others from getting their germs. So here are a few questions to think about. Why do immunocompromised patients get more infections than others?  Why are infections often times more serious in an immunocompromised patient? And what can we do to avoid picking up every cold, flu and infection? Lets do some investigation and find out.

A body’s immune system uses a variety of defenses to prevent or get rid of infection. An infection can be caused by numerous organisms such as bacteria, viruses or fungi. That being said the immune system can be weakened by a number of disease and/or treatment. Thus making it easier for those with a weakened immune system to become ill.                       Below are some examples of what can weaken a person immune defense:

  • A breakdown of skin, lining of the mouth or any part of the GI tract. This could be cause by side effects of medications, radiation, or other reasons.
  • A person having lower numbers of the infection-fighting cells,  most commonly know as the white blood cells. This can happen as a result of certain cancers, or side effects of medications used to treat cancer.
  • The presence any foreign object. This can be an IV or an urinary catheter. Patients who have these devices have to be vigilant so infections can be avoided.

So now we know why immunocompromised patients get more infections. Now lets look into how these infections often end up being much more serious and even dangerous. 

  • For indivuals with poor immune systems many times the usual symptoms may not be present. They may not show the classic symptoms of an illness, like swelling or redness at an infection site. The only symptom they might have might be a fever. 
  • The infection can move in quickly. As we learned above that the immunosuppresed patient may be low on the infection fight blood cells, the infection can go from zero to 100 in no time flat.  For this reason alone most Doctor require their patients to report any fever as it may be the only symptom. 
  • Lastly, Their systems may not respond quickly to infection. Those with weak immune systems may have trouble getting the infection to clear their bodies. Like the “flu” it may take longer to from someone with a weak immune system compared to a person with a healthy immune system. 

So now we know how and why…. Lets see what we can do to prevent infection.

The KEY to prevention this time of year:

  • Make sure you get a yearly flu shot!! As well as the pneumococcal vaccine when you are eligible. Please make sure you get the proper pneumococcal vaccine that provides long term immunity to one type of pneumonia. 
  • In contrast to the flu shot that is given yearly. The pneumococcal vaccine is only to be given every 5 years.
  • Make sure to get enough sleep. Lack of sleep will actually lead to a weaker immune system.
  • If you are traveling on public transportation you might want to consider purchasing an N95 face mask in case you are seated next to the cougher. 
  •  WASH YOUR HANDS, WASH YOUR HANDS, WASH YOUR HANDS!!! This is essential, especially if you are wiping your nose as many infections will gain entry to the body through this route.
  • Try to avoid contact with anyone who might be sick. Even the common cold has the potential to make a patient with a weakened immune system very sick. 
  • Many suggest immune stimulants, this time of year, such as echinacea. However, before starting these stimulants you really should consult your doctor. This is said because conditions such as RA, and Lupus are associated with an overactive immune system. Taking an immune stimulant could potentially aggravate these conditions.

Hope this information helps you during this cold and flu season

~Amber

Resources:

  • Https://www.verywell.com/immunosuppressive-meds-prevent-illness-189184
  • Https://www.stjude.org/treatment/patient-resources/caregiver-resources/infection-tips/infections-immunocompromsed-patients.html

A Day in the Life Getting Benlysta 

My Experience 

Yesterday, I finally got my Benlysta infusion. I was 4 weeks late due to surgery, illness and then change in insurance. That was a LONG four weeks. I could really tell I was late. I’ve been hurting more and so dang tired. But then the days following are pretty miserable. However, I’ll take those two yucky days to get three good weeks. I am so grateful that I qualify for this medication and that it helps me!  Everything else I’ve ever tried has given me very little help. So I’m hoping that being back on this, after being off for a year, that I will see the great results I did for the two years I did previously!!! 

So for the two days after the infusion I keep my nausea and pain  medication close. And plan on not leaving the bed. It wipes me out totally and all I want to do is sleep. I know I should be up and doing something but I just don’t have the energy.  It’s much like getting Chemo. So I must just rest for a couple of days and let your body heal!!

What is Benlysta?!?

For those of you that don’t know about belysta it’s a monoclonal antibody. It acts by attacking our immune systems and wiping them out. This is essential because with Lupus our immune system is fighting our body. So by wiping it out it can no longer attack our body thus decreasing our symptoms (in theory!)  

How is Benlysta Given?!? Whats the Procesure?  How Long Will It Take?

Benlysta is give only intravenously. And takes at least one hour. Although the slower you run it the less likely you are to have any kind of reactions (Itchy, nausea, headaches). Mine is run at a minimum of 1.5 hours.  Most people will also get pre- medications of Tylenol and Benadryl to also try to prevent those reactions. However, overall reaction rates are low.  Most places have you go into a hospital based infusion center. These could be in the hospital, in the rheumatology office or even in the cancer centers. When you get there they will go over your chart with you and do vital signs. Get your iv started or port accesses and get your pre meds given then start your infusion. Then you can read a book, watch tv, or take a nap, whatever you chose to pass the hour to two hours that you will be there while the medication infuses. Once it’s done you will have your IV removed and be on your way. 

How Do You Feel After the Infusion?

Generally after the infusion for a couple days you will feel pretty run down and “yucky,” yes that’s a medical word. You may be achey and nauseated and very tired. All that is normal. Normally after a couple days you start feeling pretty good. For me, when I have my infusion on a Friday I usually sleep all weekend and then feel better and have more energy on Monday. And will feel good for about three weeks, until the week leading up to the infusion when I start feeling more run down and more achey again. So, overall I get usually get about three good weeks a month from each infusion. Which for me is fabulous!! 

You don’t know what a Benlysta is? Or have more questions? 

I will attach a link below to the benlysta website below for anyone who is interested. 

http://www.benlysta.com/

Friendships…. And Chronic Illness

If you suffer from ANY kind of Chronic Illness you know how hard it can be to maintain your friendships!! They just don’t understand what it’s like to have an illness that at times dictates your life. Most won’t understand that you don’t like to cancel plans and stay home. but sometimes it’s necessary. Many will think that you are just being flakey, lazy or just don’t want to leave your house. When in most situations that is far from the truth. So if you could tell your friends anything about living with a Chronic Illness what would it be?  Below is a list, that I complied from a few different resources,  of things People with Chronic Illness want their friends to know.

  1. I wish my friends could feel the real guilt that I feel when I have to cancel our plans at the last minute. I do not enjoy cancelling at the last moment.
  2. I wish my friends would understand that there is NO “Quick Fix,” and on most occasions I won’t “Get better soon!”
  3. I wish my friends would understand that just because I am laughing or smiling that I may not feel better. Laughter is the best medicine.
  4. I wish people would understand that it is horrible being on the outside looking in at your life, and not often be able to participate.
  5. Please don’t give up on me. I still love and care about you, and want you in my life. If you were on the opposite side of the table you would wish the same.
  6. Many wish that people in their life would understand I have to scrimp and save my energy to go to an event. I may look really great and seem in such a good mood. But I will pay for going to said event for several days after the fact.
  7. I really don’t like always being alone. So come over, bring some coffee and lets watch a movie.
  8. Don’t forget about my partner, if you see him ask how he is and know that he is working so hard to keep our family and house running.
  9. Just because I try to stay positive, doesn’t mean I am “ALL BETTER.”
  10. I wish my friends know just how much I love and appreciate them! I can never thank them enough.
  11. I wish people would stop comparing my illness. It makes us feel minimized.
  12. I want people to know that I am still me. The Illness I have doesn’t define me!!

There are ways that we can help our friends to understand our condition and make it easier for them to stay in our lives.

One way that you can work on keeping friends while fighting a chronic illness, is to help them help you. We need to stop analyzing or friends motives and focus on how they can help you. You can do this by making sure that when you are feeling “okay” that you fell your friends and family how they can help you when the pain is bad. This will relieve some stress from your family and friends because they know exactly what should or shouldn’t do to help.

Another way that you can work on your relationships while being chronically ill. Is to understand why dealing with your pain is hard for them. Many people don’t do well when they are forced with their loved ones mortality, because it makes them face their own. Which is very uncomfortable for most people.  We also need to understand that often times when a person is in pain they are more irritable than normal and people don’t enjoy being around an irritable person.

We need to find a way to work your friends in to your life.  If you get invited to a full day of shopping, but know that this will be too much for you. Suggest an alternate plans, so you can still be a part of the day without facing overwhelming fatigue and pain.

When all else fails be your own best friend. Even when your friends are super caring and empathetic, they will never understand what it is really like to live with your condition. So instead of wasting time and energy trying to explain everything to someone else, spend that time on yourself . Pr0viding validation and support to yourself that you are wanting from someone else.

No matter how hard we try we will lose friends as we go through our journey with chronic illness. It just happens because people don’t understand things that they can not see. And since a lot of chronic illnesses fall into the invisible condition category, they won’t be able to understand. All we can do is try to explain our condition and pray that they will join our journey with us. I hope the tips above will help you in some way.

 

Resources

-https://themighty.com/2016/03/19-things-people-with-chronic-illness-want-their-friends-to-know/

– http://www.health.com/health/gallery/0,,20401193,00.html

WHY EXERCISE DOESN’T HAVE TO BE A DIRTY WORD


When you have a chronic illness and/or chronic pain the last thing you want to do is exercise.  But it’s one of the first thing that you will hear from your doctor as a way to make you feel better.  That often leaves you frustrated and annoyed, saying “I hurt too much and am way to fatigued to ever think about exercise.” However research shows that it does have benefits for the chronically ill. That leaves you asking “What kind of exercise can I do when I can hardly move.”  Lets discuss that along with the benfits of exercise.

So here we go, exercise is good for you they say. Well how is it good for us?

Physical benfits of exercise:

  • Helps to build a stronger heart muscle to help combat heart disease.
  • Helps to low blood sugar
  • Improves muscle strength to help stabilize your back and improves muscle function.
  • Can reduce pain caused by Arthritis or Fibromyalgia.

Exercise can also help to reduce depression or anxiety a person may feel. A study was done at UC-Davis School of Medicine that showed that people with better mental health feel less pain. So we need to work to improve our mental health by exercising. Exercise causes release of the “feel good hormones,” (serotonin and dopamine)  which work to improve your mood, appetite, sleep and memory.

So now we know why we need to get moving, but what’s the next step?

  • It is a MUST that you speak with your physician before you start any kind of exercise program. They will be able to help you determine what kinds of activities and intensity levels you might be able to handle. 
  • Consider working with a personal trainer who has experience with your illness. As they can be helpful when starting a new exercise regimen.
  • Start SLOW and build up. If it has been awhile since you have been doing any execise it will take a while to build up your endurance. Walking for a few minutes a day is better than no walking.  Your body will slowly adapt  and get strong with regular exercise.
  • Choose activities that you enjoy. If you enjoy doing something you are more likely to want to keep doing it. 
  • Choose  a buddy to workout with. This can help to keep you motivated and accountable. 
  • Alternate your activities to keep exercise fresh. 
  • Be patient with your progress. Overexerction could make your pain worse.
  • Move at your own pace. Never try to keep up with a class if what they are doing is causing you pain. 
  • And most importantly accept that some days you will be able to do more that others.

Now we know why, and what to do and accept when starting a new exercise program.  But what kind of exercising should we do?  What exercises are good for people like us.  Lets find out what is recommended. 

Here are a list of exercises for people in pain:

  1. Walking- This is a low-impact activity that is good if you have the physical capability. One of the biggest benefits of this activity is that you can do it just about anywhere, any time.  And do not have to join a gym to do so. 
  2. Swimming- This activity is great for people with OA, have musculoskeletal issues, or any joint disease. This activity is beneficial because swimming and water exercise defies gravity, so there are not any pain on the joints and the risk of injury is low. 
  3. Yoga- The breathing that is done when doing yoga could be as helpful to ease pain as the movement and stretching. It is cautioned that the extreme range of motion could cause injury. So it is recommended that you do whatever is comfortable to do not push past that. 
  4. Tai Chi- This activity is good for the young and old alike. As long as you can move you can do Tai-Chi as is incorporates the mind and body. Tai-Chi done twice a week has been found to reduce pain, stiffness and fatigue in patients with Fibromyalgia. It helps to build strength, endurance and balance. 
  5. Pilates- This activity helps to build core strength. And was developed for a “society that’s extremely burdened by low back pain by Joseph Pilates. People who have Fibromyalgia can also benefit from Pilates. It has been found that piilaties improved pain more that a relaxation/stretching regimens. That being said this exercise requires instruction. So make sure you find an experienced teacher. 
  6. Simple stretching- This activity can be done anywhere, in line, in bed or even in the car. Research shows that “Stretching and getting all your body parts moving in a full range of motion and working just a little bit against gravity is helpful” Dr. Fine (health.com)
  7. Light-weight and strength training-  Working with weights can be particulary helpful for those with arthritis. By doing so exercises that strengthen the joints around an injury it takes the stress off the joint you are using. Its important to pace yourself when working with weights as they can cause injury. If you have been inactive for a significant time try starting with using a soup can as weight or do sit-ups or push-ups. 

We have now covered why to exercise, how to start an new regimen, what to watch for and then the exercises recommended for those with chronic pain or illness.  So what’s left? GET MOVING!! 

  • Http://www.goodtherapy.org/blog/get-moving-chronic-illness-and-benefits-of-exercise-0706154
  • Https://www.spineuuniverse.com/wellness/exercise/7-tips-exercising-when-you-have-chronic-pain
  • Http://www.health.com/health/gallery/0,,20436269,00.html/view-all

How do you deal with Depression?

Depression is something that just comes along with having a chronic illness. And the winter season seems to make it worse because you are not able to go out doors and keep up with the things you like to do. So what do you do to deal with it? What tips do you have for dealing with depression and making your life a little easier this time of year?  A lot of research has been done on his area and there are lots of ideas out there to deal with depression.  So here we go!

For MILLIONS of people living with a chronic illness and depression is a fact of life. According to WebMD Depression is one of the most common complications for those who have a chronic illness. It can be estimated that nearly one-third of people with some type of medical condition will show symptoms of depression. There is really no question why the two go hand in hand. When you have some sort of chronic illness it changes how you live your life, can limit your mobility and just make everything harder.  That Chronic Illness like Lupus can cause you not to be able to do the things that you like to do and can eat away at your self-confidence. Medications taken for said conditions can also have side effects of depression.  So it can some time look like a no-win battle.

Any illness that is around for a long time can trigger depression. In general, the risk of chronic illness and depression gets higher with the more severe conditions. In general the risk of depression is generally 10-25% for women and 5-12% for men, in the healthy population. However, those with chronic illness are at a mich higher risk of depression which a 25-33% risk.  The risk is also much higher for anyone who has a history of depression.

When a person with chronic illness develops depression it often times makes the condition worse.  Especially in conditions that cause pain or fatigue. Depression can truly increase a persons pain and fatigue. When you combine depression and chronic illness may lead the person to isolation. Which then in turn can make the depression worse. It’s a never ending cycle it appears.

If you think you are developing depression what kinds of signs should you watch for? Many times they are overlooked because one might think that what they are feeling is just a part of their illness. People will assume that feeling sad is just part of being diagnosed with a long term illness and are often masked. This leads to the symptoms being treated but not the depression itself. However, BOTH the symptoms and the depression need to be treated.

How can you treat depression? There are many options out there for those who develop or have always had depression. Early diagnosis and treatment can help ease any distress the patient feels, and the risk of complications and suicides. In many cases treatment for depression can improve a persons overall medical condition,  and increase the persons quality of life. As well, as increasing the likelihood of sticking to a long term treatment plan.  When the depressive symptoms a person is feeling is related to an illness or the side effect of a medication. The doctor may need to adjust or change the treatment regimen. When the depression is a stand alone condition it should be treated on its own.  Greater than 80% of those who have depression can be treated with medication successfully, psychotherapy or a combination of both.  The hard part with medications for depression is that they can take several weeks to truly take effect. So it is important that the patient stays in contact with their physicians during that time to ensure all goes well.

Now what can you do to live with depression?  What tips can we provide for you? Here are a few that may help you.

  • Try to avoid isolation. Find ways to reach out to family and friends. If you don’t have a good solid support system work to build one. Your Doctor or Therapist should have a list of support groups or be able to give you a list of community resources.
  • Take the time to learn as much as you can about your condition. Knowledge is power when it comes to getting the best treatment for your condition. And give you a sense of independence and control.
  • Make sure that you have support from medical experts you trust and who you can talk to openly about any ongoing questions or concerns.
  • If you think that your medications might be bringing you down, talk to your doctor about other possible treatment options.
  • Make sure to have a conversation with your doctor about pain management.
  • It is essential that you try to continue doing the things you have always done. Staying connected can help boost your self-confidence as well as your sense of community.
  • If you start to feel depressed or think you are becoming depressed DONT WAIT. Talk to your Doctor or Therapist as soon as you can.

Resources:

http://www.webmd.com/depression/guide/chronic-illnesses-depression

http://www.health.harvard.edu/staying-healthy/10-steps-for-coping-with-a-chronic-condition

What Can You Do to Improve Your Sleep?

Before sitting down to write this I did quite a bit of research to find the best recommendations to improves ones sleep. Things that we all haven’t heard multiple times The best recommdations I found came from Spark People. I will provide the link to the article at the end of this post.  So here we go…. One step closer to better sleep.

When you live with chronic pain, headaches, an autoimmune disease or an old nagging injury from the past it makes it hard to get solid rest.  Which then throws you into the, what seems like, the never-ending cycle of escalating pain and sleeplessness. Due to the fact that when you hurt most of the time you just can’t sleep. 

Pain doesn’t just cause you problems falling asleep and staying asleep. It makes an impact on the KIND of sleep you get when you are able to sleep.  However, sleep has so many benefits for your health, more than just staving off pain.  Sleep has a huge impact on your brain and how it learns, and how it remembers things.  Sleep helps to bolster the immune system, keeps moods stable, and helps to reduce stress. It has been said that sleep can even reduce the intensity and duration of pain. So lets dive into the tips for sleeping better.

– Adjsut your pillow. 

Okay this one may seen silly and obvious, but if you have pain in your neck or back, sleeping on your stomach can actually make the pain worse. Due to the fact that it causes your spine to arch and your neck to twist. Always check with your physician before making any big adjustments to your sleep position.  So how can we change this? Body pillows can help reinforce the changes in position you are making.  One Suggestion is that if you have back pain, sleeping on your back with a pillow under your knees can help the back pain as well as preventing those bony prominences and help keep your hips in alignment.  If you have more neck pain than back pain you might want to consider looking into a an orthopedic or contoured pillow could provide support. It is also important about to think about other places you might sleep. So make sure you have a travel pillow if you fly a lot or are in the car for long periods. 

– Practice Mindfulness 

Do you have a hard time turning your attention away from the pain while you are lying in bed at night? Here are some examples of simple, pain-reducing techniques.

  • Set a timer for about 5 minutes
  • Find a comfortable position and lie down
  • Focus on your breathing. Take notice of your lungs expanding and contracting as you breath in and out for a few moments. 
  • Try to put yourself in a natural frame of mind (I know easier said than done). For some it might help to imagine cares and worries sailing or floating away.
  • Think about your thoughts but do not label them “good” or “bad.”
  • If a negative thought pops up like (I’m never going to sleep because this pain is just so terrible) acknowledge the thought and then put it aside and go back to focusing on your breathing.

– Relieve Muscle Tension

Take time to make time in your schedule for pain-management techniques that work for you. These could be things like a hot bath, an ice or heating pad, or a few moments of focused slow and deep breathing. Common relaxation rituals, such as listening to calming music, aromatherapy (lavender works best for sleep), and relaxing aching muscles to break the cycle of pain and may help you drift off to sleep more easily. 

– Only go to bed when you are feeling sleepy 

A person can NOT will themself to sleep.  In fact, the more you focus on falling asleep, oftentimes the harder it will be to fall asleep.  If you have been unable to go to sleep after 20-30 mins of lying down, you should get up.  Get up and go do something soothing, like knitting or reading your favorite book. 

– Adjust the room temperature

There is no one temperature that will work for Everyone, but as a general rule you will sleep better if you are in a cool environment. 

– Get Strategic 

Sleep hygiene and the habits you follow around bedtime can make a big difference in how well you will sleep.  Below are some suggestions to improve your sleep hygiene and give some examples of things you might want to implement into your bedtime ritual. 

  • Limit environmental noise at night (like a snoring spouse) or wear earplugs.
  • Make your bed just that a place to sleep and to be intimate, not a place for work or media viewing. 
  • Go to bed and get up on a schedule. Seven days a week. (Even on the weekends)
  • Try to avoid long naps especially late in the afternoon or evening. 
  • Limit caffeine &/or alcohol intake in the hours before bed.
  • Exercise daily but not within three hours of going to bed.
  • Limit time spent using electronics of any kind before bed.
  • Try to avoid sharing your bed–or your room– with pets, which can disrupt your sleep.

– Rethink your Attitude

When you are constantly thinking and dwelling on your pain it can impact your life negatively. Thus making it harder to sleep. So try to schedule a fun disctraction, even something as simple as reading a book or favoriate magazine.Doing so can take your mind off of the sleep  and pain issues at hand and make it easier for you to fall asleep. 

– Consider Supplements  

Supplements such as Melatonin which is a sleep promoter may help you get the much-needed sleep without needing a prescription for sleep. If you want to take this route, make sure to check with your physician before starting any over the counter medications. 

– Rule Out Other Underlying Conditions

When you pain is not tolerable,  sleep is virtually impossible  If the other options haven’t worked for you, you should talk to your doctor.  And discuss your daily pain levels and how to balance your day to day function with pain relief. Ask directly about the pain that occurs near bed time and ask if there are any medications that you might be able to use for nighttime pain relief, if appropriate. 

A quick conversation with your PCP during a routine visit can help by ruling out conditions that might be causing your inability to sleep (or sleep well).  This conversation could help rule out sleep apnea and ensure  that meds you are already taking are not interfering with your sleep. 

Sleep has such a major impact on your daily life that it is essential that you are able to find a way to get that good restorative sleep. By getting that good sleep there is a good chance that you will also be able to decrease your pain.  And breaks that no sleep, lots of pain cycle
I hope you find some of this information helpful. It is a little different information that we often times will hear form our physicians. May you be able to find “the spot” and start sleeping a little better.

~Amber

Resources

  • http://www.sparkpeople.com/resource/wellness_articles.asp?id=1841
  • Http://www.spine-health.com/blog/5-little-known-tips-sleeping-chronic-pain 

Migraine Info

15 Things People Who Don’t Get Migraines Don’t “Get” About Migraines

15 Things People Who Don’t Get Migraines Don’t “Get” About Migraines

If you live or work with someone like me who has migraines for long periods of time, you must have been on the receiving end of a range of expressions and actions that may have left you wondering: Are they faking it? What did I do to offend them? Am I boring them?

Nope. Probably nothing. And probably not.

Trouble is, it’s hard to ‘get’ migraines unless you get migraines – and, according to The Migraine Trust,five out of every six people don’t You probably don’t know that it’s not just a headache. It’s a multi-symptom genetic neurological disorder. And some of those symptoms and behaviors you see are not what they seem.

In fact, many of us actually fake feeling what you would deem “normal” more often than you can imagine – just to preserve our relationships and our jobs. It’s a rare day when I feel perfectly normal, with no pain and no extra-sensory symptoms.

This “It’s Just Migraine” decoder may help you discover something about migraines that you didn’t know and help you preserve a great relationship or job. It explains some weird behaviors you might otherwise misinterpret, react to or be offended by. Hopefully, it will help us all communicate a little better.

15 Things People Who Don’t Get Migraines Don’t “Get”

1 – We’re not picky eaters; we’re just easily nauseated – Waves of nausea can happen at any time, and are often hard to disguise. We turn our noses away, lift a hand to make sure we can hold down our cookies in public. It’s not the broccoli you served for dinner; it’s just migraine.

2 – We don’t yawn because we’re bored or tired – Yawning could mean we’re tired (and we probably are, since sleep can be elusive and inconsistent for many who get migraines). For many, yawning is one of those subtle warning signs of a prodrome (the first of four phases before the pain starts) in which the brain is begging for more oxygen. Your life story isn’t boring; it’s just migraine.

3 – We smell like a bear, and we smell it first – Every day, and especially before, during and after a migraine attack, all of our senses are on high alert. Many who get migraines can smell gas and smoke way before others can; it’s one of our cool superpowers. The flip side: strong perfume, paint, gasoline, exhaust fumes and more can trigger an attack. Our eyes often give away what the nose detects. It’s not a five-alarm fire; it’s just migraine.

4 – We can be a bit reluctant to commit – Because migraine threatens to interrupt the most trivial events on the biggest days of our lives, we’ve had to disappoint people by canceling things we really want to do. So, we might be vague. If you sense a reluctance to make firm plans, it’s because we don’t want to let you down, buy tickets we can’t use, or trigger a migraine. We fear a migraine will, once again, disrupt our plans. Going to a Coldplay concert sounds amazing but might not be doable; it’s just migraine.

5 – We’re not insecure, we’re freezing (again) – Cold hands and feet, and often nose and body temps, are a common migraine symptom before and during an attack. And what do you do when you’re cold? Cross your arms, hunch up your shoulders, drop your head. Trouble is, that also looks just like insecurity. I’m really totally comfortable in my own skin; it’s just migraine.

6 – We truly hate calling in sick – When asked if we can fill in at work on Friday or deliver the presentation to the customer on Tuesday, you want to hear “absolutely,” but you might get a vague response from us. Why?Because we hate calling in sick, we want to be dependable team members and we don’t want to make a promise we can’t keep. Ever. Our jobs, our income and our insurance matter a lot, even more than to the average person. Because migraines are notoriously difficult to predict, we might hedge a bit, but we’ll get it done. It’s not that I can’t be counted upon, it’s just migraine.

7 – Our super-sensitive senses can get overwhelmed easily – What do hostile or angry people do? They often leave the room without explanation, leaving you to wonder what you did or said. So do people who get migraines. Bright light, annoying sound, nauseating smells, and the risk of vomiting can all cause us to leave quickly and retreat to a quiet, dark space. Better to speak up next time. Remember, I’m not mad at you; it’s just migraine.

8 – Sometimes we just can’t stand being touched – Many a marriage has been tested by migraines, especially when one spouse initiates sex and the other rolls over and away. One strange migraine symptom is allodynia, in which ordinary touch feels intensely uncomfortable and actually painful. Our love hasn’t changed, but we do NOT want to be touched at that time. Not tonight doesn’t mean not ever; it’s just migraine.

9 – Our necks often hurt before our heads do – People who are stressed often roll their heads and shoulders or grab their necks to ease the tension. So do migraine sufferers, because neck pain is just as common as head pain in a migraine. They don’t always happen at the same time, though. Even though we can be at ease with the circumstances around us, it might not look that way. You’re not stressing me out; it’s just migraine.

10 – We’re not stuck up; we’re sensitive to light – Comedian Larry David once said that “People who wear sunglasses indoors are A-h*les.” Bono would beg to differ. People who are sensitive to light, like most migraine sufferers, are smart to wear shades indoors and out. It’s called photophobia, and it’s a common symptom. We’re not trying to be aloof jerks. We’d like to make eye contact; it’s just migraine.

 

11 – We’re not crazy or drugged; it’s an aura – If I’m shaking my head, covering my eyes or babbling nonsensically, I really am not crazy. I’m just experiencing an aura, the migraine phase that happens to many people before the pain phase. If my eyes were open, I might be hallucinating or experiencing visual distortions like Alice in Wonderland. Don’t call the insane asylum; it’s just migraine.

12 – We’re not necessarily grumpy, even if we look like it  – Don’t mistake my furrowed brow for being angry with you or the world. It’s not you at all. It’s just a physiological response to pain in the trigeminal nerve that’s acting up around my scalp and behind one eye. I’m not whining about it because I don’t want to sound like a wimp, so I’m forging on quietly. You didn’t say or do anything wrong; it’s just migraine.

13 – Sometimes the world feels like it’s spinning – Grasping the rail or a friend’s shoulder can be a sign of fear, or it can signal dizziness. Fear spreads like wildfire, so you shouldn’t misinterpret this signal. Some people experience migraine-associated vertigo (MAV) and fainting with an attack. You don’t need to be afraid of anything; it’s just migraine.

 

14 – We’re not high-maintenance; we’re just careful – You know those people who seem so demanding at a restaurant due to their latest diet? Gluten free, vegan, organic, wild-caught seafood and so on?  We’re all entitled to choose the foods that work for us. However, a migraine sufferer can lose days of work to an attack started by hidden MSG or aged cheese, for example. The list of food triggers is long and very personal, so don’t judge and don’t pressure someone to eat something they’ve said no to. It’s not that your casserole doesn’t look delicious; it’s just migraine.

15 – We predict storms better than the weatherman – You know people who say “it smells like rain today?” Sometimes they’re right. But the more we learn to listen to our bodies, the more we can tell: there’s a front coming in. It’s not a hidden barometer in our pocket; it’s just migraine.

If you’re confused about migraines and the people who suffer from them, just ask.  We’re sharing this with you because you matter. Thanks for taking a minute to better understand us. Now, what should we know about you?