The secret to better health - exercise

Whether you’re 9 or 90, abundant evidence shows exercise can enhance your health and well-being. But for many people, sedentary pastimes, such as watching TV, surfing the Internet, or playing computer and video games, have replaced more active pursuits.

What exercise can do for you

Millions of Americans simply aren’t moving enough to meet the minimum threshold for good health - that is, burning at least 700 to 1,000 calories a week through physical pursuits. The benefits of exercise may sound too good to be true, but decades of solid science confirm that exercise improves health and can extend your life. Adding as little as half an hour of moderately intense physical activity to your day can help you avoid a host of serious ailments, including heart disease, diabetes, depression, and several types of cancer, particularly breast and colon cancers. Regular exercise can also help you sleep better, reduce stress, control your weight, brighten your mood, sharpen your mental functioning, and improve your sex life.

A well-rounded exercise program has four components: aerobic activity, strength training, flexibility training, and balance exercises. Each benefits your body in a different way.

Fighting disease with aerobic activity

Aerobic exercise is the centerpiece of any fitness program. Nearly all of the research regarding the disease-fighting benefits of exercise revolves around cardiovascular activity, which includes walking, jogging, swimming, and cycling. Experts recommend working out at moderate intensity when you perform aerobic exercise-brisk walking that quickens your breathing is one example. This level of activity is safe for almost everyone and provides the desired health benefits. Additional health benefits may flow from increased intensity.

Protecting bone with strength training

Strength or resistance training, such as elastic-band workouts and the use of weight machines or free weights, are important for building muscle and protecting bone.

Bones lose calcium and weaken with age, but strength training can help slow or sometimes even reverse this trend. Not only can strength training make you look and feel better, but it can also result in better performance of everyday activities, such as climbing stairs and carrying bundles. Stronger muscles also mean better mobility and balance, and thus a lower risk of falling and injuring yourself. In addition, more lean body mass aids in weight control because each pound of muscle burns more calories than its equivalent in fat.

Ease back pain with flexibility exercises

Stretching or flexibility training is the third prong of a balanced exercise program. Muscles tend to shorten and weaken with age. Shorter, stiffer muscle fibers make you vulnerable to injuries, back pain, and stress. But regularly performing exercises that isolate and stretch the elastic fibers surrounding your muscles and tendons can counteract this process. And stretching improves your posture and balance.

Preventing falls with balance exercises

Balance tends to erode over time, and regularly performing balance exercises is one of the best ways to protect against falls that lead to temporary or permanent disability. Balance exercises take only a few minutes and often fit easily into the warm-up portion of a workout. Many strength-training exercises also serve as balance exercises. Or balance-enhancing movements may simply be woven into other forms of exercise, such as tai chi, yoga, and Pilates.

Exercise at a glance

In a nutshell, exercise can:

• reduce your chances of getting heart disease. For those who already have heart disease, exercise reduces the chances of dying from it.
• lower your risk of developing hypertension and diabetes.
• reduce your risk for colon cancer and some other forms of cancer.
• improve your mood and mental functioning.
• keep your bones strong and joints healthy.
• help you maintain a healthy weight.
• help you maintain your independence well into your later years.

I guess you could say that it’s never a good thing when your Dr. calls you at home over Labor Day week-end, and begins his sentence with ‘Carol, I’m afraid I’ve got really bad news”.  That is what my Monday was like.  It has gotten better since then.

I had a brand new ‘thingy’ removed from my shin the week before.   After I noticed that it had just popped up out of nowhere, I showed it to family members- they all said it looks like nothing.   I watched it for a couple of days, as it grew rather quickly, was uneven with ragged edges.   I called my Dermatologist and got right in (I had a pre-cancerous lesion removed from my lip over New Year’s).   He took a quick look and said- “It looks like nothing”.   Then, he looked under his magical magnifying monocle, and said, it looks kind of unusual.

We’re going to remove it and get a biopsy.  And, they did.

And, it came back as malignant melanoma (Is that redundant)?

When I hung up with Dr- I immediately went on-line to trusted sources to see what I could learn.   I know the best and the worst now.  I spent about 24 hours stressed about this.

Then, I woke up on Wednesday morning, and I knew that I was prepared for whatever the outcome would be.   I am having a larger HUNK of skin, tissue removed bright and early Monday morning.

That will also get biopsied.  I personally feel that I was very vigilant and found it early enough that will be the end of it for now.    For now.

Cancer has gotten it’s hold on me, I’m nearly 61, and I’ve already lost my Dad and my sister to Cancer.   The C word- I never thought I would have to say it about myself.   You could say- OH- It’s just skin cancer- but do you realize that melanoma is the deadliest of all skin cancers?   The most rare too.   Only 2% of all skin cancers are melanoma.  And, they easily  metastasize to lymph nodes and organs. 

We also already know that the incidence of getting cancer is greatly increased by having PIDD.   I’ve heard lots of numbers thrown around - but since they don’t agree- I won’t quote any here.   But, the other thing about PIDD is that we mount a very poor response to fighting invaders= and I guess you could call Cancer – the DEARTH INVADER! 

So, I’m trying to get my house in order this week-end (literally and figuratively) as I prepare for the surgery Monday am.

Why am I doing this- well it beats sitting around and sweating it out.  Plus, being a Type A- it feels better this way.

I’m writing this so that you will also be more vigilant about skin spots- make sure to get them checked.  And, never let something you are suspicious of fester.   Get in to your Dr ASAP.

We all get fed up with having a chronic disease.   It wears us out, and it grows old after a while.

How many times can we tell our family and friends and co-workers NO?

This is a very humorous take on this topic written by a PIDD patient and friend of mine, Shawne.

I hope you enjoy it as much as I did.

                                     I want a divorce!

Listen, this immune deficiency thing was fun for a while. I mean I’d been looking for so long, years and years. I had spent hours searching the Internet, reading profiles, talking to important smart people who seemed like they might be able help me find it. I even flew all the way to Rochester, Minnesota just because I thought maybe I’d meet it there. But even in Rochester, Minnesota, I didn’t find my immune deficiency.

I’d nearly given up hope of ever finding anything that was right for me, when that nice doctor in Boston finally introduced me to my immune deficiency. I was so happy. I mean some people look their whole lives and die before they every find something like my immune deficiency. I knew how lucky I was.

So for a while, it was great. Like I could finally relax now that I’d found it. It went to bed with me every night and it was always still there when I woke up in the morning. It even came to work with me. And if I didn’t feel up to doing anything much, it was perfectly content to hang out on the couch and watch bad movies with me.  With my immune deficiency, I finally felt heard after all those years of trying to get someone to listen. Especially doctors. I’d been trying so hard for so long to figure out a way to get doctors to listen to me and it turned out the immune deficiency was pretty good at helping me with that. It spoke up for me, when I couldn’t. Also, it introduced me to a lot of its other good friends, which I’m grateful for.

But here’s the thing…it’s starting to smother me. I mean all this closeness; don’t you think it’s just a little too much? I’m sick of the way it leaves my sheets all wet with sweat at night, and it leaves little balls of kleenex everywhere. It doesn’t seem to care if the house is a disaster and if the laundry hasn’t been done in weeks. In fact, I think it prefers things that way. It reliably attacks me every three months, dragging me to one of those doctors it seems to be so fond of. I’m beginning to find that experience to be a little boring. At night sometimes, it stays so close I can’t even breathe. Literally, I have to take a shower right away in the morning just to get it off my chest and get a little breathing room. Half the time, it follows me into the bathroom. Speaking of bathrooms, it even wants to control what I eat and, if I do eat something it thinks I shouldn’t, it goes out of its way to make me pay for it.

It distracts me at work. And it’s clear it doesn’t want me spending time with anyone else, because just about every time I make a plan, my immune deficiency finds a way to try to force me to stay home. I always go anyway; I refuse to give in to my immune deficiency! But then my immune deficiency insists on going with me and doing everything it can to mess up my good time anyway. I really fear it’s trying to convince me I should just stay home with it and watch bad movies all day. But see, that life may be fine for the immune deficiency, but it isn’t fine for me. I mean this business of controlling what I eat, keeping me from having fun with anyone else, attacking my body and forcing me to stick needles in myself - doesn’t that sound a little like a domestic violence situation?

So, I’ve decided to file for a divorce from my immune deficiency. I know it’ll be hard. It may try to attack me and it may do everything in its power to stop me from leaving it. I’m going to need a really really good lawyer. You see, I just don’t want to be married to it anymore. Maybe I’ll call that nice doctor in Boston who originally introduced me to my immune deficiency. Maybe he knows a good lawyer who can help me with my divorce.

If you read my previous blog, you may know that I was waiting to get the results of a biopsy.   That news came in shortly before noon on Wednesday, Jan 5th.   My New Year officially began as soon as I hung up the phone with the news that my results were negative.   So, HOORAY FOR THE NEW YEAR finally!                                                   

I wanted a fresh start.   I wanted to erase 2008 (for many reasons).  I wanted to begin anew my promise to myself to live healthier, exercise more, visit family more often, work harder, study, and NOT GET SICK.  That is the plan, along with may others in 2009.  I hope, I pray that we all get our wish.

We need a better economy, we need a better leader, we need better healthcare – and the list goes on.

It’s hard to be actively involved in anything if you are laying on the bed feeling like crap, or down with pain, or anything else than can happen to someone with chronic illness.

The pledge to myself is one that many of us can make.

Eat healthier

EXERCISE – even if all you can do is walk for 5 minutes

Sleep more

Stay compliant with meds

Embrace a spiritual life

Keep family and friends close

PLAY

Pay attention to what your body is telling you.

So, now following my news of January 5th, I wish all of you a very Happy and HEALTHY New Year – and wish for you what I wish for myself – only the best.

I am aware that many of us are glad that 2008 is over for different reasons.   Many are tied to financial downturns.

Some are political.   Some reasons have to do with job loss and job security.   In the Land of PIDD, many of us are glad due to health reasons.

I AM ONE OF THOSE PEOPLE.

I felt so good in 2007, that I just assumed it was going to last forever.   Nothing lasts forever, and since I turned 60 this year, I should have learned that lesson by now.

Last January started out great.   I was in South Carolina on biz, and then visited my Mom and sister.   But, alas, I flew home to a very sick husband who was happy to share.   His germs that is.

Within one week, I had the same nasty virus that he and much of the country had.  I was sick for 3 weeks and thought it was the end of it.   I was off to Phoenix on biz, and while there, ended up with pneumonia, collapsed lung, pleurisy and bronchitis.

And, it came back 2 more times – finally ending in May.

AH- SUMMER.   It was great.  I felt healthy, energetic, happy and sunny.  I played, I exercised, and enjoyed life and once again, thought it would never end (WILL I EVER LEARN)??

I had my 6 month check-up at retinal clinic only to learn I had major retinal damage.   NO EXPLANATION WHY.   I went to Chicago to see an expert and ended up getting tested for cancer and autoimmunity (AGAIN). 

Tests for cancer came back the Monday before Christmas negative.  

AHHHH- BIG OLE SIGH OF RELIEF.  

Tuesday before New Year, on dental visit, learned I had very suspicious looking sore on lip that might be CANCER (AGAIN).

I had a lip biopsy on Friday and now look a bit like Count Dracula (forget the picture of me on the blog- this does not resemble how I look today)!   Dr sliced some of my lip away- and I was forced to drink milkshakes for dinner.  SOME JOY in this event at least – except that it’s only 7 degrees outside.

And, now the WAIT for results.

The thing is- I’ve added several new autoimmune disorders this year- I think the number is either 8 or 10- and this could be one more if it’s not cancer.

So much for starting the New Year with a clean slate.

I wrote down all of the lousy things that personally touched my life is 08 and mentally THREW THEM IN THE FIRE as the ball dropped on New Year’s Eve.   But, with that exercise, a new, better, improved 09 was to come up out of the flames.

We shall see.

I just may have to start my New Year after the Dr calls to tell me that I do NOT have cancer.   If he calls with any other news- all bets are off.

Here’s to a great year for my PIDD peers- hope you have good health- great doctors, a supportive network, no insurance hassles, and a smile on your face.

Today is a milestone for me.  I turned 60 years old.   When I was diagnosed with PIDD, I NEVER thought I would see this day.   I did NOT believe then, that I could live this long.   I was miserable.  I had no energy.   I felt so crummy, I seldom got out of bed.  I was afraid.   I had never heard of this disease.

What would the future hold for me?   Life was very scary in the years that preceded, and followed my diagnosis.  When I got my diagnosis of PIDD, I was still recovering from Valley Fever (coccidiodiomycosis) which had given me fungal pneumonia for nearly 1 year.  I was also beginning to experience some autoimmune disorders.  At the very same time, my Dr had the nerve to find a suspicious lump in my breast, and sent me for a biopsy.  I was beginning to wonder how much one person can deal with at once. 

I soon learned that you can deal with plenty at once.   My attitude these days……. just throw it at me- I’m ready for anything.

Whenever I was waiting for the results of my breast biopsy, I evolved into another person.   Suddenly I had no fears, I knew who I was, and I was prepared for whatever was coming in my life.   It’s funny how you can make peace whenever you need to.   And that peace has never left me.  That is partially how I deal with PIDD now.  

I was also blessed with an incredibly optimistic attitude.   And, great genes from my Mom.   Of course, the genes my Dad gave me most likely included the PIDD gene.   I won’t get angry with him over that.   He was my hero.   So, I take the bad PIDD gene, and mix it with the optimistic gene, and I get me.

The person who turned 60 today.   I am blessed by a loving, very patient, very caring husband, 2 fantastically talented and handsome sons (Yes, I know, I know) and 3 beautiful and brainy granddaughters (I know, I know).   My Mom is alive and kicking major butt!!  My sister and I are twins who happen to be nearly 3 years apart and love each other very much.  I have wonderful friends who not only care about me, but also make me a better person, so  life is really good - even when it’s not so good.

                                       My sister, Dee, my Mom and Me

I was very fortunate in that I found a treatment for my PIDD which not only allowed me my independence, but also turned my health around.   I started taking Vivaglobin when it was FDA approved about 2 1/2 years ago- and it has changed my life.   I have the energy, the good health, and the flexibility to have ME back- and not to have to spend most of my time in bed feeling crummy.

This is not to say that I don’t have my share of problems, because I do- 

But I  have learned to deal with them so much better.

Since I have my support group, my life saving medicine, and my positive attitude to help me get through the day with a little luck- I’ll live to say:

I turned 70 today.

But for now, I’m VERY VERY HAPPY to have turned 60 today.

Carol

I would like to share with you the difference Vivaglobin has made in my life.  I was diagnosed several years ago with PIDD, and had been taking brand X up until last Fall.   I was feeling better on IgG therapy- but not at all like I began to feel by last October.

I started using Vivaglobin in September of last year, and within the first month, I felt so well that I WANTED to get outside and exercise like I used to.

I began hiking, walking 4 miles per day, biking, doing yoga and now after 1 year, I’m also weight training and have lost most of the weight I gained when first diagnosed.   I don’t want you to think I’m recommending Viva as a weight loss method- but the difference in how I felt opened me up to additional life style changes.   I am much healthier than I was before being diagnosed due to the extra sleep I insist on getting, the well planned and healthy diet, the exercise, and most importantly- my daily dose of Viva.  And, did I mention the attitude adjustment?? Instead of feeling like a patient, I feel normal again- but I just have to deal with this ‘issue’ everyday.

My friends have accused me of either drinking it or rubbing it on my face because of the positive changes they have noticed in my energy levels and demeanor.

I do not do Sub Q the recommended way of once a week with a pump.

I actually push the Viva every day.  My doctor and I decided that this was the best method for me based on my life style- which is very active and hectic.   Everyone will have a different plan of attack with their Viva- but this is mine.

I also want to admit that the difference I saw with the Viva was also attributed to the dose which did change from 5 times per week to daily.   That certainly helped improve my quality of life.

I am free to answer any questions you may have about the use of Sub Q and Vivaglobin.  I will answer them either on this blog, or privately.

Just send me a comment and I will reply at once.

Ok- so now I’ve had a headache for let’s say- 2 months running.

I feel really good otherwise.   But if I touch my forehead, or my eye area- I have pain.   Sometimes, it hurts when I don’t touch.   Do I, or do I not, have a sinus infection?  Should I, or should I not, start my meds?

This is just one of the many questions that plague PIDD patients on a regular basis.   If I have a sinus infection, and I don’t start the meds, it may turn into an upper respiratory infection.   Then what?   I can’t fight that very well.   But, I don’t want to start my meds if I don’t have to cuz then I’ll get a really bad tummy ache, and it will probably lead to another fungal uprising!!!

What kind of life is this?

Well, it’s my life and your lives and these are our everyday decisions.  Our everyday challenges.  This seems so minor, and yet, is it?

 I’m off to another evening of warm compresses on my forehead, and tomorrow another day of acupuncture to try and  get my sinus’ to drain.

If it doesn’t start working soon, I will have no choice.

That’s where we all stand on every day issues.

We have no choice.  We have to take good care of ourselves, and be our own advocates.

We can’t run to the doctor at every slip and slide, we have to learn to manage our health in the big picture.   Are we remembering to do our nasal irrigation to hopefully prevent a sinus infection?   Are we keeping the nasal passage moist, and not allowing it to dry out and crack and potentially allow bacteria to enter?   Are we remembering to NOT shake hands during the upcoming cold and flu season?   Wash our hands at every chance?

What else do we need to remember? 

Ad infinitum.

This week was my 59th birthday.  A bit of a milestone in my mind.   My older sister died from non-hodgkins lymphoma with undiagnosed PIDD when she was 58.  I did not want to be 58.  I feared I would follow in her footsteps.  I have been much more fortunate.  I was diagnosed when I was 55, and have been receiving Sub Q treatment with Vivaglobin.  This drug, combined with additional drugs that treat my inflammatory problems from my autoimmune disorders, have given me a quality of life my sister was not afforded.   I also focus STRONGLY on the benefits of eating wisely, exercising regularly, resting when necessary, being involved in extremely rewarding work (working with PIDD patients and their physicians), having loving family and friends around me, and a team of doctors who really care.    Laughing also is very beneficial.

This is an RX I plan on following as long as I possibly can.

I highly recommend that you follow a similar plan of attack on your own PIDD.  Don’t forget to ‘Carpe Diem’ as well.

Looking forward to 60 now.

Hi from Minnesota. I have been living with PIDD (Primary Immune Disease or Primary Immune Deficiency Disease or Immunodeficiency) for many years. I started treatment for CVID in 2004. I currently receive my IgG therapy by self-infusing, or using the Sub Q (subcutaneous) method. I have been feeling so much better since receiving IgG therapy. I feel like I have my life back, and it’s a very active life. I have 2 sons and 5 grandkids. They really help me keep my attitude positive, and my energy charged. I am able to work, play and exercise thanks to my treatment. Yes, I still leave time for resting and relaxation and I sleep 8 or 9 hours every night which is how I recharge the ole battery. I was in sales before I got sick, but since I’ve been diagnosed with PIDD, I have dedicated my life to advocating for this disease in any way that I can. I love working with patients, doctors and healthcare workers. It’s all about education. I sincerely hope that you enjoy reading my blog and feel free to contribute any comments. We are one in this journey.