Learning and Living with Chronic Illness

In the last few days I have had many questions about arthritis. Not exactly a topic I would chose to claim as an expert, but alas I am. It’s not a fun disease to deal with nor is there a cure. It’s also annoying because it’s your own body attacking your necessary body parts. As with many autoimmune diseases nobody really knows why this happens. There are theories that it’s heredity or that it is triggered by an infection, but there is no way to cure the nasty attacker.

One of the biggest misnomers about RA is that it only happens to old people. This disease strikes any age – usually females. The idea that it is an ol’foggey disease is because it gets confused with OA – osteoarthritis. OA is wear and tear on joints – which typically takes years to develop yielding a higher age group to posses the uncomfortable striker.

As the aging process takes place it seems we find that our friends and family discover unfortunate diseases, like RA, and are at a loss when it comes to dealing with it or offering support. What is it that you have been recently diagnosed with? Do you have a child or parent that battles with a disease and you are looking for support? It would be wonderful if you would share your story so this could be a place of support and information.

Dealing with a chronic illness requires a massive amount of physical and mental energy. A positive realm of support can be the best medicine and alleviate the a heavy heart when all seems lost. I look forward to your feed back and hope you have a pain free day. -trvw

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Necessary Evil

pillshotWhen it comes to managing an illness, the very medicine that adds comfort  and control to life can also strip away longevity. It is disappointing to think about how the medication that you swallow or inject into your body can be slowly killing you while at the same time it is adding value to your well-being in the short term. In order to live a better life, taking the potent poison becomes a necessary evil.

However, on a positive note, medicine is evolving all the time. Hopefully advances will be able to cure diseases and omit the need for drugs while correcting any damage done from taking medicine. I have been injecting and swallowing poisons since I was a child as a means to cope with rhuematoid arthritis.  It scares me to think what is happening to my body when I take something that is supposed to be helping me. At the same time I can’t let the RA continue to attack my joints and potentially cripple my valuable, active lifestyle.

The best way I deal with this issue is by trying to take care of what I do have. Take a look around at the people that abuse their health with excessive alcohol, smoking, or bad food. They are no healthier than I am. I focus on being happy and putting value to the life that I have. I have no choice but to put my fear aside and hope that my efforts will pay off. If I live with a positive attitude then I will get more out of my time alive then I ever will if I sulk and wonder what if.

It’s not that I never get worried about how the disease is controlling my fate or if I’m trading one evil for another. I have to clench my teeth and swallow my pride when I see my knuckles swell. Some of the scary thoughts that worry me I have to push away because I refuse to let them control me. Surrounding myself with supportive and caring people is one of the best ways to fight off the necessary evils in life. No matter who you are or what you are dealing with, there comes a time when you have to make decisions that will leave you wondering “what if?” Don’t live in the “what ifs” of life because the “what it is” of life is waiting for you to make the most of it. -pm

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Finding Understanding

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Family and friends are important through our entire lives. The post Forever Friends discussed the value of having strong relationships. It make us feel good knowing that there are people in the world that care about how we feel and who try to understand the things that we might be going through in our life. Understanding is an important characteristic to have amongst good friends.

With a disease like JRA/RA life can be hard to understand. Sometimes we don’t look or feel sick at all. Then other days simple tasks feel like fighting a giant monster. It’s inconsistent at times and it feels like it fakes us out because some things that were easy one day are hard the next. It can be hard to explain to other people. That is why understanding friends are great to have. It is also very important to be understanding with your own self as well as being understanding to the fact that not everybody can relate to you and your disease. Try not to get upset that some people, even doctors, just won’t understand.

I don’t like to let on when I feel bad. That makes it difficult when I need a good, understanding friend but they don’t know about the pain, worries, or frustrations I am feeling. Try to explain to the people you trust how sometimes you just need them to be understanding or ask how you’ve been feeling. Finding understanding with the caring people around you is one of the best medicines for you! -pm

 

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Parental Control

lollyTo understand type 1 diabetes is to understand a life of schedules, “diet” food, shots, meters, medicine, and more. The American Diabetes Association defines it like this: “Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. In type 1 diabetes, the body does not produce insulin. Insulin is a hormone that is needed to convert sugar (glucose), starches and other food into energy needed for daily life.”

It can be managed but not cured. This autoimmune disease is difficult for the person stricken with it; to know they struggle with it takes understanding from everyone around them. There is a lot of chemistry that goes on in the body and when it gets out of control it makes life hard.

Having a parent with a disease is never easy-it means having compassion, understanding, and knowing that it’s ok to get mad sometimes. I have a parent with type 1 diabetes (lets abbreviate – t1d). So the things that I write will be from the kid point of view. I hope to offer tips and suggestions for families that have t1d in their lives.  I’m not a shrink or doc so use advice – as on any site – to your discretion. I’m just a person with experience willing to share if it might help. -pm

 

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Doctor, doctor Part II

redbandaidsThe trip to the doctor isn’t fun – we determined that in Part I.  Now in part II I will suggest 3 lists to take with you to your next doctor’s visit. It’s important to be an informed patient. To get the best care from you doctor you have to be prepared and smart.

1. The Question List

The Question List is going to be the one that has every little ache and pain that you forget about once the doctor enters the room. It’s a good idea to keep an ongoing list of items between visits.  Just before you go, mark off ones that are no longer an issue and prioritize them in order of importance.

2. The Medicine List

The Medicine List should list every prescribed, over-the-counter, and vitamin/herb supplement, with dosage.  It’s is important because there are many medicines that sound the same, are close in spelling, and have a range of doses.  Even if you don’t take anything on a regular basis think back if another doctor prescribed something for a flu or cold, if you had taken pills for blood pressure but don’t need them now – things like this can give a doctor clues to your medical history. Add any allergies too.

3. The Info/Contact List

This list will have all the junk that you might need for the stack of forms you might need to fill out.  Have your insurance information ready(there are 2 or 3 numbers on the card that they might need even though they copy your card, so take your card too.). Have the names and numbers of the friends and family that you trust to be your emergency contacts. Write down medical history information like past surgeries that you’ve had, major illness that you are aware of in your family and who had/has it.

The smarter and more prepared you are the more serious your doctor will take you.  Hopefully, it will result in better care.  If you don’t feel like you are getting the care you deserve from your doctor, move on.  You already have your lists made. -pm

Other articles in this series:

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Doctor, doctor

redbandaidsMost of us hate going to the doctor.  Some avoid it at all cost, unfortunately many people are dependent on regular visits in order to manage their medical conditions. I’ve heard people tell me that they wouldn’t even go if it weren’t necessary to get their prescriptions refilled.  So why is it? What’s the reason we hate the doctor?  Where do I start?

First it’s expensive.  You’ve got your co-pay, actual payment, and then medicine-to be brief.  Second, it’s time consuming.  I don’t know why they don’t just suggest that patients show up “sometime in the morning” or “after the noon hour.” The scheduling process is poor and aggravating.  I certainly understand that there are several patients to be seen in a given amount of time, but that should not result in forcing the patients to wait.  Third, loss of faith. I believe that too many doctors have taken on a larger work load than they can manage and it has contributed to poor medical care.  I have witnessed a doctor breeze in to visit with a patient, barely make eye contact, nodding his head while passively listening to the patient’s complaint, while reading over the chart. Well, I assume it was the patient’s chart, he might have been placing his lunch order for all I know.  The diagnosis was to take some NSAID and wait it out a few weeks, then return if that didn’t do it.  So…tell me why anyone would want to spend time and money to do a job that the trusty internet can do? Health care in the United States is scary.  I will stop there.

These days a visit to the doctor requires the patient to be smart and prepared.  Yes, prepared.  Next time read the 3 lists that you should take with you on your next trip to the doctor.  Munch an apple in the meantime. Can’t hurt, might help. -pm

Other articles in this series:

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Nix Chapped Lips

lip-balmThe cold, dry weather is hard on everything.  Dry lips are easy to fix with all the fun, tasty options on the market.  Lip care isn’t just for the ladies; guys there are several non-glossy formulas to remedy your chapped chops too. Listed below are a few good choices to try.

Chapstickis one of the classic selections for guys and girls.  Not glossy, smooth formulas, and a variety of flavors.

Merry Hempster is a good organic choice that you can find in most health food stores. Also a balm that’s genderless.

EcoLips has vegan and energy formulas.  Fun for something different.

Nivea Kiss of Shine is a squeezy tube for gals that like a hint of color, super gloss, and lasting moisture.

Alba Botanica has a gloss and balm made using organic ingreadients and have really tasty tropical flavors.

Neutrogena Moisture Shine offers a SPF 20 cooling gel that feels good without tasting like medicine.

Carmex and Blistex are good standbys that have branched out with a variety flavors and formula to suit everybody.

Keep them with you all the time to keep the lip crusties away. They’re a fun way to protect your lips and shine your smile. -pm

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Pollen-O-Plenty

If you spent the weekend hanging on to a hankie you’re not alone. There are as many as 50 million people in the US that battle allergies. It can be a small bother or an immense aggravation depending on the severity. Fortunately, there are ways to avoid some of the irritants out there. First, of all you can prepare yourself by checking your local pollen count. Pollen.com has a local count so you can view local and national levels.

Unlike avoidance of pet dander and dust mites, it is more difficult to avoid exposure to pollens, since it is present in the outdoor air. Here are some tips from About.Com to minimize pollen exposure:
– Keep windows closed prevent pollens from drifting into your home
– Minimize early morning activity when pollen is usually emitted-between 5-10 a.m.
– Keep your car windows closed when traveling.
– Stay indoors when the pollen count is reported to be high, and on windy day when pollen may be present in higher amounts in the air
– Take a vacation during the height of the pollen season to a more pollen-free area, such as the beach or sea.
– Avoid mowing the lawn and freshly cut grass
– Machine dry bedding and clothing. Pollen may collect in laundry if it is hung outside to dry

Finally, if you can’t seem to escape them not matter how hard you try, there are several options of OTC and prescription drugs that can help. Take some time to do your research so you get paired up with the proper medicine. Don’t let all the options blow you away. 😉 -pm

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