PASSING BY THE OPEN WINDOWS

There is a movie called “The Hotel New Hampshire” which was made sometime in the 80’s starring Beau Bridges, Jodi Foster and Rob Lowe.  It was about a strange family that loved hotels and experienced great loss.  The themes of the movie are finding joy where you can find it despite the circumstances, that life is worth living and finally suicide is not the answer.  The term “Passing the Open Windows” means keep living, stay strong and life will get better.  

Those of us who live with rsd/crps deal with thoughts of suicide at various times in our lives. One statistic says that approximately 20 % of those who live with chronic pain commit suicide.  It is a topic which is discussed openly and frequently in most support groups.  You will find that there is no general consensus on the issue but a lot of understanding because at one point or another pain becomes too big, too strong and too constant that all you want to do is let go and rest.  I discovered that a person needs two things to hang on thru the worst of the pain.  They are things my pain doctors and pain psychologists had told me but; there are some things that you have to find out for yourself.

The first thing is that you have to find that one thing in life that you love unconditionally; that one thing that you cannot see yourself living without.  My is my dog, Ozzie.  Ozzie lives for me.  He is always by my side and when I am in extreme pain will not leave me even if he needs to go to the bathroom or is hungry.  One person that I know says that they unconditionally love rice pudding and that is what keeps them moving; another said that for them it is video games.  Each person has to figure out that one thing for themselves.

The second thing is that you have to have a purpose in a life.  Something that makes you want to get up and face the pain no matter how bad it is that day.  I have, after 13 years, finally found my purpose.  I am here to help others who are in pain.  I do this through two different avenues my blog and working for an organization called Chronic Intractable Pain and You; http://www.cipay.org

 

My blog is my opportunity to express myself; to be creative and tell others what living with rsd/crps has been like for me.  It is an outlet for my feelings and with every tick of the view counter I know that what I have written has touched someone.  I will admit that there are times when writing the blog becomes a burden because it is hard for me to think of things that I think people want or need to hear.  However, I think that this issue is resolved because I have met some incredible people who are living with rsd/crps and are feeding me topics that they feel I should address. 

The second thing that gives my life purpose is working with a group call Chronic Intractable Pain and You; CIPAY for short.  CIPAY was founded by a pain psychologist in Nevada who happens to suffer from a pain disease.  She wanted to build a place where people in pain could talk with complete freedom with others in pain, find information and resources as well as an advocate when they need to go to the doctor or Emergency Room.  I joined the site in May of last year and was approached by the owner of the site about joining the staff.  I thought about it and accepted the position.  The position is volunteer for the moment but I have been offered a paid position that should come available within the next six months to a year.  The work keeps my brain active and I feel a sense of accomplishment and pride that I haven’t felt since before I was hurt.

Some people feel that their lives are over once they develop a pain disease.  They feel that it the pain is too strong for them and has taken their life.  Those are the people that stay in the bed or the chair and don’t move for months on end.  Those people are the ones that will eventually decide that life is not worth living.  As for me; I will keep passing the open windows.

What do you weigh Today

It seems like everyone is always complaining about their weight.  America has always been weight conscious and thin is in.  People in chronic pain struggle with weight just like everybody else.  The only difference is that we often have outside influences that play a major role in whether we lose or gain weight.

Some of the medications that we take to control our pain have some interesting side effects.  Sometimes a medication will make you ravenous and you cannot seem to get enough to eat.  You find that you crave certain foods, like sweets, and you cannot seem to stop eating.  Nothing that you do seems to help; you keep eating and eating and eating. Other times the medications take away your appetite.  I find that I will cook dinner only to pick at it and then either save it for later or throw it away.  I will eat breakfast at 6:00 am, usually 2 toaster streudel and a bowl of fruit, and then eat a small dinner at about 8:00pm. 

Sometimes medications are not the issue at all.  The issue is swelling or edema.   Edema is defined as;

“Edema is the medical term for swelling. It is a general response of the

 body to injury or inflammation. Edema can be isolated to a small area or

affect the entire body. Infections, pregnancy, medications and many

medical problems can cause edema.  Edema results whenever small blood

vessels become "leaky" and release fluid into nearby tissues. The extra

fluid accumulates, causing the tissue to swell.  Numerous medications can

cause edema, including:

·         NSAIDs (naproxen, ibuprofen)

·         Calcium channel blockers

·         Corticosteroids (Prednisone,Methylprednisolone)

·         Pramiprexole  “

The loss of potassium in your body can also cause edema.  Edema can be related to all sorts of medical conditions and there are a variety of types.  Check with your doctor if you have any type of swelling that is accompanied by pain or that is not relieved using ice and elevation.

The traditional treatment for edema is to elevate your legs above your heart and diuretics.  I was hospitalized twice because the potassium had disappeared from my body and I swelled to enormous proportions.  One night in the hospital with iv potassium and I was back to my regular swollen self.  The doctor tried putting me on diuretics to help me lose the fluid.  I thought that diuretics were going to be my godsend because I thought that I would lose the water weight but no such luck.  All I got were numerous trips to the bathroom. 

So, now I have 3 sets of clothes; normal, puffy and fat, and three sizes of shoes: 7.5, 9 and 11 and my dreams of weighing 130 or less are in the dust.  I just have to learn to live with my weight and the yo-yoing.  It’s a hard thing to accept and I am not there yet but, I will keep trying to like my new body; regular, medium, or supersized.            

But You Don’t Look Sick?!

I hate those words and unfortunately, I hear them quite often.  RSD/CRPS, and other chronic pain diseases like Fibromyalgia and Neuropathy, is called the invisible disease because there are few outward symptoms.  Most people think that because we are not screaming in pain or if our face is not screwed up in agony that we are not in pain.  Well, I have news for them!  People who have chronic pain diseases learn how to mask the way that they are feeling.  We develop a “poker” face that we allow few to see past.  It is one of the ways that we have learned to cope. 

When we smile or put on make-up or even dress up; people assume that everything is okay.  People tend to make comments like,”You must be feeling good today”, and even the hated “You don’t look sick”.  When we hear those comments we get angry and want to scream at them that “WE ARE SICK!   I HURT!    I AM IN PAIN, IT NEVER GOES AWAY!”  There are times when we question whether we should bother at all with this type of coping method; that we should just show those people how we really feel.  We question whether coping with the pain in this manner is a good idea and we wonder what would happen if we let these people see how we really feel.

Personally, I believe that it wouldn’t make a difference.  When people make those comments to me I tell them that I am in pain; I am always in pain and that I have learned to mask the way I feel in order to make them more comfortable in dealing with me.  I have learned that coping is better than floundering and as long as the people who count: my doctors, case manager and family, know that though I look good that I am still in intense pain then the rest of the planet can go hang! 

Everyone wears a mask of some sort.  Those of us in chronic pain have developed it into an art.  We just ask that the next time that you see us and we happen to be smiling, laughing or even looking good that you watch what you say.  Instead of saying “You must be feeling better” try “You look nice today”.  Ask us what level our pain is; using the typical scale of 0-10.  Tell us that you know we are hurting but seem to be coping well today.  Realize that the mask we are wearing today is simply that; a mask and understand that pain is something that we have learned to live with.

A Letter to People Without Chronic Pain

This letter was posted on a chronic pain Face Book page.  There was no recognized author (Written by libit; 13 April 2009).   It says everything that I want and need to say to those people who do not have chronic pain.  I hope that those of you with chronic pain will use it to help you communicate with "normal" family and friends and that those of you  who do not have chronic pain will gain a greater understanding of what I face on a daily basis.


To my friends and family who do not have chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know are actually misinformed.  In the spirit of informing those who wish to understand; these are the things that I would like you to understand about me before you judge me.

Being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

There is a difference between "happy" and "healthy." When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, "Oh, you’re sounding better!" or "But, you look so healthy!" I am merely coping. I am sounding happy and trying to look "normal." If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.


Chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying " You did it before" or "oh I know you can do this!" If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do. 

Getting out and doing things does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to "get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?


Another statement that hurts is: "You just need to push yourself more, try harder." Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language.  Chronic pain may also cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.  Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is a worldwide network (both on and off the Internet) of people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.  I am working with my doctor and I am doing what I am supposed to do.   I take the medicine that he prescribes and follow the routines that he wants me to follow. 

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be "normal." I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.  In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you.  I appreciate your listening to what I have to say and I hope you have gained a little bit of understanding about me and my chronic pain.  Thank you.

The Joy List

When you have a chronic pain disease like crps; there are times when you get despondent over the changes the disease causes to your mind and body.  There are the times when it is easy to curl up inside yourself and hide from the world.  It is easy to block out your family, other loved ones, your responsibilities and your problems.  Sometimes it is hard to bounce back from these episodes but I use a short cut to help me bounce back faster.... the joy list.

The joy list is a simple way of reminding yourself that there are things that make your life worth living despite the pain and suffering you are going through.  Creating a joy list is easy.  All you need is a small notebook and either a pen and pencil.  You simply make a list of all the things that bring you joy.

Here is a sampling of my joy list:

• Gerber daisy's
• The smell of cut grass 
• The smell of bacon in the morning
• The sound that rain makes against the house
•  Ozzie, my dog
• Picnics in the park
• Roses
• Unexpected presents
• Christmas morning
• Helping others
• Working in the garden
• BBQ Potato Chips
• Fresh fruit
• Touring Historical Sites
• Chicken Livers
• Watching movies
• Fires in Winter
• The taste of a grilled steak
• Fried Crab Claws
• The Bright Star Restaurant
• Davenports Pizza
• The smell of a new car
• Sun rises
• Sun sets
• A long hot bath
• The Ballet
• Watching Alabama Football
•  Going to garage sales
• Shopping at thrift stores

I add to my joy list all the time; whenever I remember something or experience something that brings me joy.  When I am feeling low I simply pull the list out and read it.  It never fails to make me smile and remind me that life is good.

It can be hard; living with pain.  It's easy to forget that life is good; that there are things out there that can make you smile and laugh.  Using the joy list is a tool to help remind myself of those times when the pain blocks almost everything else out. Why not try it and see!

A Secondary Diagnosis

People who develop CRPS are at risk of developing secondary condition and diseases. Unfortunately, this has happened to me. I have been diagnosed with secondary *LYMPHEDEMA* and *SJOGRENS SYNDROME* which are two conditions that most commonly develop in persons with full body crps in stages three/four. Tonight I will only be talking about lymphedema which I have in both legs and both arms.

Lymphedema  (LE) is defined as

“… an accumulation of lymphatic fluid in the interstitial tissue that causes swelling, most often in the arm(s) and/or leg(s), and occasionally in other parts of the body. Lymphedema can develop when lymphatic vessels are missing or impaired (primary), or when lymph vessels are damaged or lymph nodes removed (secondary).  When the impairment becomes so great that the lymphatic fluid exceeds the lymphatic transport capacity, an abnormal amount of protein-rich fluid collects in the tissues of the affected area. Left untreated, this stagnant, protein-rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen availability in the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in lymphangitis (infection).

Lymphedema should not be confused with edema resulting from venous insufficiency, which is not lymph-edema. However, untreated venous insufficiency can progress into a combined venous/lymphatic disorder which is treated in the same way as lymphedema.”

Lymphedema can develop in any part of the body.  The signs and symptoms include:

·         a full sensation in the limb(s)

·         skin feeling tight

·         decreased flexibility in the hand, wrist or ankle

·         difficulty fitting into clothing in one specific area, or ring/wristwatch/bracelet tightness. 

It is important that you seek immediate medical advice if you notice persistent swelling as early diagnosis and treatment improves both the prognosis and the condition.  There are three stages to lymphedema:

·         Stage 1 (spontaneously reversible):

Tissue is still at the "pitting" stage, which means that when pressed by fingertips, the area indents and holds the indentation. Usually, upon waking in the morning, the limb(s) or affected area is normal or almost normal size.

·         Stage 2 (spontaneously irreversible):

The tissue now has a spongy consistency and is "non-pitting," meaning that when pressed by fingertips, the tissue bounces back without any indentation forming). Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.

·         Stage 3 (lymphostatic elephantiasis):

At this stage the swelling is irreversible and usually the limb(s) is/are very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery called "debulking" at this stage.

When lymphedema remains untreated it may result in several severe consequences, including fibrosis, joint immobility, amputation and life-threatening infections that may require repeated hospitalizations for intensive intravenous antibiotic therapy. Failure to obtain proper treatment, including compression garments, devices and bandages, predisposes the patient to these serious consequences.  protein-rich fluid continues to accumulate, leading to an increase of swelling and a hardening or fibrosis of the tissue. In this state, the swollen limb(s) becomes a perfect culture medium for bacteria and subsequent recurrent lymphangitis (infections). Moreover, untreated lymphedema can lead into a decrease or loss of functioning of the limb(s), skin breakdown, chronic infections and, sometimes, irreversible complications. In the most severe cases, untreated lymphedema can develop into a rare form of lymphatic cancer called Lymphangiosarcoma (most often in secondary lymphedema).

Depending on the severity of the lymphedema, the recommended treatment plan should be determined using an approach based on the Complex Decongestive Therapy (CDT) methods which consist of:

1.      manual massage

2.      bandaging

3.      proper skin care & diet

4.      compression garments (sleeves, stockings, devices such as Reid Sleeve, CircAid, Tribute, as well as other alternative approaches)

5.      remedial exercises

6.      self-manual lymphatic drainage & bandaging, if instruction is available 

I currently attend The Lakeshore Outpatient Clinic twice a week where they perform manual massage and then the therapists put the affected limbs in a sleeve that pumps air around the limb forcing the fluid upwards towards the kidneys.  I was being wrapped using eight different types of bandages from toe to knee; and was taught how to do it so the wraps could be removed for baths.  Today I now wear the Tribute garments; which look like oven mitts and are custom made.  This garment is quite expensive but I believe that it works much better than the bandages and the Tribute is easier to put on and take off.  Prior to being sent to the Lakeshore Clinic, I experienced several onsets of lymphangitis/cellulitis, a severe infection resulting from my LE disease, requiring multiple hospitalizations.

Lymphedema is no small matter.  It is a serious disease and requires a lifelong commitment to keep it under control.  If you have CRPS and suffer from constant edema; please see your doctor and discuss with him the possibility that you may have acquired LE.

Revised © 2005 National Lymphedema Netwo=rk.  Permission to print and duplicate this page in its entirety for educational purposes only, not for sale.  All other rights reserved. 

The information above is adapted from Lymphedema: An Information Booklet, a classic NLN publication now in its 8th edition. This 16 page booklet addresses the lymphatic system, causes of lymphedema, symptoms, lymphangitis (infection), lymphedema risk reduction, treatments, contraindications, diagnostic studies, special warnings and reimbursement issues