The Happy Challenge


The suffering of the chronic pain patient can be mostly silent, somewhat invisible.  People will sometimes ask “where are the bruises, the medical machines or the marks on your body”?  Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence.  The “silent screams” are more often quiet because we are seen as complaining if we are too vocal.  When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at http://www.butyoudontlooksick.com).  There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about.  Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.

We may agree to attend an event or a family outing if at all possible.  We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer.  Sometimes we go, but cannot stay very long; they say we are “phony”.  We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us.  That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.

Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily.  Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share.  It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.

If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be.  I also don’t admonish others who are not in the same place as me.  I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients.  Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.

Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly.  I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.

I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc.  It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me.  If I can show one person, a light at the end of the tunnel, then I have given them hope.   Someone sent me this private message and it said;   “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings?  Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day.  No drugs, no docs, just PT and pain shrink….”.  Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing.  But it’s not for nothing. We are not all in the same place at the same time.  There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have.  I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on.  I don’t just “wait for the next day to arrive”.  Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”.  But that is my choice.  I do take a normal dose of Opioid pain medication, of which my life “depends on” now.  I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this.  I GOT the pleasure of attending a U.S. pain conference this past weekend.  I got to do it and got through it, because I am able to take a pill that helps me get through these events.  Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain.  It’s not for everybody and that’s OK.  We are all different, it’s supposed to be that way.  I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK.  I cannot please everyone and it’s alright.  I’m not crying any longer about the message. Instead I feel badly for the person who wrote it.  They are in a darker or more sad place than me. I will be there for them if or when they are ready.

It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.

 

 

What You See Is Not What You Get!


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Having Chronic Pain is unlike the pain following a surgery or even the pain after an injury. Many things about Chronic pain are not seen with our eyes. There are so many “invisible diseases” that involve living with exhaustion, illness and pain.  Many people think they know about these issues. If they’ve not witnessed life with a chronic pain patient, then they truly cannot understand or know what we live with on a daily basis. People are misinformed and sometimes quick to judge persons living with pain day after day.  Some think we are lazy, anti-social or just rude.  We cancel appointments, shopping trips and dinner dates with our friends and family. But we are not any of the above. We are people who have hopes, dreams and inspirations; just as anyone else. The issue is that our futures don’t include many of those same things after we become chronic pain patients.  We must grieve our losses and find new hopes and dreams.  This is the price that we pay for living with chronic pain 24/7/365.

I am still “me” underneath the chronic fatigue and pain.  I still want to talk with you and hear about your day, family and dreams.  In between the days of staying in my PJ’s and lying in my bed or on the sofa, I try hard to be a part of your “normal” world.  Some days I may even look “normal” to you. In fact, most of the time, I probably appear to be “just like everybody else.  I try to wear nice pants, cute dresses and sometimes I put on make up, just like you do! If you visit my Social Media photo feeds, you’ll see someone who “looks normal”, holding onto her grandchildren’s hands, smiling and actually joyful underneath the pain somewhere.  Sometimes even sitting on the floor with them.  You may read about me “babysitting” for our grandchildren; or going out to dinner with our friends.  You may even want to “judge” me by saying to yourself “How can she be that sick or in that much pain, if she’s doing all of these things?”  If you think like that, I can’t blame you because I once thought those same misinformed thoughts.  What you don’t see, is how I get to the floor or how long I am actually down there.  You don’t see my husband helping me (and doing most of the work) to get me up and off of the floor.  You don’t actually know how long I am down there or how many pillows may be behind my back. You also don’t know that I most likely stayed home in my pajama’s all day until 4:00 pm when we had dinner plans at 5:15 pm.  You also aren’t privy to the information of how long I might’ve stayed at dinner and “if” I was able to even eat anything that night.  Not only do I have several chronic pain illnesses, but many of them are invisible to you. They are very much visible to me. I can “see” them with each new line on my face and each new grey hair that gets covered up each month. I can’t only “see” the pain, but I feel it with every part of my being. It doesn’t go away, not ever.  Though some days are better or worse than others; the chronic pain of “Invisible Disabilities” and “Invisible Illness” is apparent to me every minute of every day.  Often I fight with myself about going to sleep at night.  Do I try to go to bed at a more normal time and maybe get 4 -5 hours rest? Or do I stay up until I drop; then fall asleep quickly and wake up in just 2 or 3 hours?  If I sleep more than 2 or 3 hours, I will awaken and cry.  Whether it be inner tears or outward ones, I will cry from feeling as though someone set my body on fire due to the CRPS. I will have tears from feeling like my neck and back are broken from the Degenerative Disc disease, Spondylosis, Scoliosis and/or multiple herniated/bulging discs in both my cervical and lumbar spine; not to mention the Chiari malformation I in my neck. Yes, if I move or get up before I’m ready, I definitely will cry.  It’ a routine that we have, you know?  My husband gets up at 6:00 am every day to give me my medicine; just so that I will be able to get up with him a couple of hours after that. He is my hero.

You cannot feel Gastroparesis, but if I eat one wrong food at dinner time; I will be up all night and very sick. My husband, who is also my soul-mate and my caregiver; knows all too well about these long nights.  I have worries, though he continues to tell me that they are unfounded; that he will get tired of all of this one day. It’s not much fun to be with someone who is constantly complaining about pain, so I try to keep it to a minimum.  But even to him, my pain is not invisible.  He knows the grimace of  CRPS and the fidgeting of the intensifying pain on an outing.  He knows that when I start rocking back and forth, it’s his cue to step in and say “time to go home”.  I know that my own family gets frustrated with me because I’m not able to babysit “alone” or have kids dropped off on the spur of the moment.  I cannot commit to babysitting for the little ones under school age for a week.  I’m not able to help take the load off of my children and their spouses, so that they can go on a trip. There are many things that I cannot do but there’s so much that I still have to give.

Please don’t judge what you do not understand. If you think you know, then go and read some more about chronic illnesses and pain. Spend time with someone like me and see how impaired the activities of daily living have become.  I’m probably not always much fun to hang out with, but I’m still “me” inside.  Digging through the pain and exhaustion, there’s a real person inside, who still has a heart and feelings that can be hurt.  Feelings that are probably more fragile than most because of the judgements, stares and hurtful words that come from some people who are misjudging and misinformed.  I’ve had nasty notes put on my windshield, that would make anyone cry.  One note said this “How dare you take this HC parking space! It must be a “mental thing”! I hope you become handicapped for the rest of your life, so you know how it feels to have someone take your parking spot”! Yes, indeed; that was the note left on my car at a little market right across the street from my house.  I had my cane in the grocery cart and the little blue HC parking permit on my rear view mirror.  But I was still judged and torn to shreds because of the way I look.

Please know the difference between being able to stand for 20 minutes and being able to stand all day.  The difference between having the flu and feeling that same way for many many years! Try and understand that what I might be able to do today, I probably won’t be able to do tomorrow.  Don’t say “Oh you look happy and healthy” or tell me that I’m looking or sounding “better”.  I’m just trying to cope with the life that I have been dealt. Please don’t judge me if I try to do awareness events or fundraisers for the causes of my illnesses and those of my friends.  Though I may “do” these things; I definitely know that I will “pay” for it later.  I will rest for days in between and sometimes weeks.  But I deserve to do things and to try and be happy; even if it is in between the pain at its worst and best.  Please know that getting out and doing things doesn’t make me feel better, it actually makes me feel worse for days at a time.

Chronic pain is hard for you to understand. It wreaks havoc on the body and the mind.
It is exhausting and exasperating.  I’m doing my best to cope and live my life to the best of my ability.  I ask you to bear with me, and accept me as I am.

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A Body in Chaos With Dysautonomia 


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Hello Luvs,

Have you ever felt so hot; sweating so profusely and you thought you might spontaneously blow up from the inside out? That is how I feel so much of the time. If the temperature drops and I get just a little bit cold, then I am freezing cold, my lips turn blue and I am shivering. It truly does take my body quite a long time to regulate when there’s a temperature change. Sometimes when I’m at home, I’ll be just sitting and watching T.V., when suddenly,  I start to sweat and feel so very hot from the inside out! I feel honestly as though I’m going to burn up, blow up or both! It’s a crazy feeling and it makes me feel so terrible. But it’s not crazy because I have my husband come over and feel the back of my neck and he can see that I’m shiny and “clammy” looking.  He has said that he feels the heat coming from my body! Others don’t seem to understand this. No one else seems to understand the  fatigue, heart racing, inability to adjust my body temperature, the GI upset,motility issues, the inability to sleep or the pain either. But all together it is called “Dysautonomia”.  It happens to someone when their Autonomic Nervous System has gone berzerk! (**The Autonomic Nervous System or ANS is every system in the body that is involuntary. This means the G.I. tract or digestion, Respiratory -breathing, Heart Rate, Pulse, Blood Pressure, Body temperature and other involuntary brain functions as well).

In 2002, I was in a MVA and this is how most everything that is wrong with me began to happen. I started to faint quite frequently. Not only did that happen, but I had problems with all of the bodily functions mentioned above. They also found on an MRI that I have  have “Chiari Malformation I”.  This is a malformation of the brain.  It consists of a downward placement of the cerebellar tonsils through something called the foramen magnum. In plain English it means that the brain stem swells and doesn’t fit very well into the spinal column. It causes great headaches called “Chiari Migraines” in the back of the head. It feels as if I cannot hold my own head up because it is too painful. For me it causes the migraines, fatigue, muscle weakness,slow heart rhythm, Scoliosis and Central sleep apnea.  This is another issue or diagnosis that falls under Dysautonomia “Umbrella”. My Chiari was found and seen on the MRI s/p MVA. I suffered a TBI as well, following that car accident. I was in Brain Injury rehabilitation for 3 years. I saw a brain injury specialist, who is a PMR physician. He did so much and helped me quite a lot.  This Traumatic brain injury makes it impossible for me to recall from my short term memory. I had trouble finding words and still today cannot read a very long book. Articles are best for me.  When writing, as in my blog here, it is very frustrating because I have to read, re-read and read it again. I don’t remember anything unless I am told about 4 times, which is also what showed up in the multiple Neuro-psych testing that I had to do because of it.

I was in a full PT/OT and speech therapy /brain injury program.  Many days I was vomiting from the medicines they were trying to force me to take. I wanted to be a “good patient” and I tried some of them, but all of them made me sick in some way or ways.  One day I kept telling the Physical Therapist that I was not feeling well and I felt as though I might faint. Nobody would listen to me, because although I was in chronic intractable pain; which is horrible and terrible pain since the  MVA, I “looked fine”. So therefore, nobody listened and I was strapped to an exercise bike as they went on talking about their weekends. I felt worse and I called out to them, but no one came. Finally, I fainted!  Onto the floor I went, with my pained legs still attached to the bicycle. I awoke to someone taking my blood pressure. They told me to lay still for an ambulance because my BP was only 70/40 and my Heart rate was only 24.

I was taken by ambulance to a nearby hospital to get stabilized. They were very kind to me. They said that they did not have the facilities to do any kind of heart surgery or things that I may be needing, such as a Pacemaker; so I waited for a transfer to a bigger hospital. After some time went by, the ambulance with the heart monitors came for me. They took me to the big Hospital and I was admitted, observed overnight and then the Cardiologist came to talk with me in the morning. It was the morning of my birthday, my 41st birthday! They came in and told me that I had something called “Sick Sinus Syndrome”. It is a Cardiac Arrhythmia; it is called a “Brady/Tachy Arrhythmia”.  My heart rate could not decide if it wanted to go up to 190 bpm or go down to 24 bpm. It kept going like a roller coaster all night long…Up…down…Up…down. I was told that my heart even stopped several times but restarted on its own. They told me that my Heart was not working or beating properly and that I needed a pacemaker. I also had something called “Prinzmetal Angina”, which they explained was actually “Coronary spasms”. I take nitroglycerin sublingual tablets for the Prinzmetal Angina. I’ve been told that after waiting 5 minutes, and after trying the nitroglycerin tablets 3 times; if it doesn’t help the pain, then I am to go to the Emergency room. From that day on, my fainting spells went away about 80%. I still feel as though I might faint at times, and I have passed out a handful of times, but I don’t actually faint very often any longer. It is a rare occurrence now, very rare.

Within several months, the Brain Injury Rehab center, and my PMR Dr. who specializes in TBI’s or Brain injuries; got me an appointment with the very best Dr. for Dysautonomia in the USA. In fact, this Physician who is the Dept. Head of Cardiology/Vascular, Pediatric Cardiology, EPS (electrophysiology or Heart rhythm disorders) and also the Head of the University of Toledo’s Autonomic Failure Clinic,is Dr. Blair Grubb, M.D.! I was so lucky to be placed in his care. It was one of the very best things that did happen to me s/p that MVA in 2002. My first pacemaker was placed in February 2003. My next Pacemaker was placed in February 2013, exactly 10 years apart. Dr. Grubb hadn’t placed the first one because it was done quickly, here in Michigan. But when he got in there to replace it, he said that the person who’d placed it first; had done so, very deeply, right inside of the Pectoral muscle itself. He told my husband that “it looked like mincemeat” when he went in there. They hadn’t placed it in a mesh bag or anything as they usually do. Dr. Grubb already knew that I had been diagnosed with CRPS in 2007 and that it had spread from my right foot, s/p surgery, to both feet and up to the knees. Lucky for me, he’d researched RSD/CRPS and he found that sometimes if an “internal surgical wash” using  Bivupicaine, is done during surgeries that it should “head off” the spread of the RSD/CRPS from the rest of the body. Unfortunately for me it did not work out the way we’d hoped. My RSD/CRPS spread throughout my body. It went Systemic or Full Body and Disseminated. Dr. Grubb came out and told my husband that when he removed my pacemaker, my heart stopped and that I’m dependent totally on my pacemaker now.  He explained also that my Pectoral muscle had had to be rebuilt. It turned out to be a long, traumatic  surgery instead of a 45 minute Pacemaker replacement.

The turn of events that lead to the car accident, several surgeries and all of the chronic intractable pain; at least led me in the right direction and into the hands of the best Dr. ever, for the illnesses that I have been diagnosed with.  I’m so lucky to have him for all of my heart and pacemaker issues. I’m also very happy that he is the best and most well known Physician in the Country and outside of our Country for Dysautonomia and Autonomic Failure or ANS failure.  As time has gone on, all of my symptoms of Dysautonomia and also POTS (Postural Orthostatic tachycardia syndrome) have gotten worse as time has gone on. I now have been diagnosed with Chronic Kidney Disease stage II, Arnold Chiari Malformation I, Gastroparesis and more.  But these are some of the worse symptoms of the disease of Dysautonomia.  POTS, is where the Heart rate and blood pressure do opposite of what they should be doing, when you stand up after sitting down.  Sometimes you may feel faint as well with this and some people do actually faint from it.

Here let me explain it to you a little better. You see,as I did above, I can tell you how I feel. You won’t be able to grasp it if it has not happened to you. It is not a “hot flash”, like those during Menopause. It is a feeling of literally being so very close to a fire that you can really feel the deep heat from it. Sometimes this feeling will  last’s hours and even after I’ve taken a shower it happens and then I need another. Some of this “heat” and feeling of “being on fire from within” is also the Systemic or Full Body CRPS (Complex Regional Pain Syndrome) along side of the Dysautonomia/POTS etc. Let me explain a little bit better from several of the Dysautonomia websites full of  information. I will post the locations of the websites at the end of my post, so you will have them too. But before the next paragraph, before I get to the more technical stuff; just let me tell you in my own words, what I feel and what I do know. I think it helps me sometimes to relate to someone or something, when they are being “real” and telling their story.  I told you some of my  “story” in the first paragraph or two. But there is so much more information for you to learn and understand about this “invisible illness”.  Dysautonomia is like at “Umbrella” as it has many different symptoms and illnesses that it “covers”.  For example, many persons with this illness, also have CRPS or Complex Regional Pain Syndrome. I am one of those people; and I live with Systemic, Full body CRPS following my 7th surgery s/p the MVA. That foot surgery was in April of 2007 and I was Diagnosed with CRPS at my post-op check up. I couldn’t believe it and didn’t want to and so I got a 2nd opinion from an Orthopedic foot/ankle specialist. The first thing that he said when he saw my foot was “definitely CRPS here is a consultation to a pain clinic”.  I also have Gastroparesis now, which is the almost like a “paralysis” of the digestive system to varying degrees. I feel full very quickly, nauseous, bloated and I feel a burning in my lower abdomen. Another issue that goes along with this is “POTS” or Postural Orthostatic Tachycardia Syndrome. You guessed it, I have this one also. They all go together like a puzzle and they fit like together because they are all under this “umbrella” of Dysautonomia.

POTS causes feelings of being light headed, fainting, fast heart beat or tachycardia, chest pains, shortness of breath, GI problems/issues, inability to exercise, and sensitivity to heat and cold as I mentioned above as in Dysautonomia. While POTS usually shows up in women who look fine and healthy on the outside, *researchers  say that POTS and the issues that come with it are comparable to the disabling complications of COPD and CHF!!*(from Dysautonomia International)

*Over 70 million people worldwide are living with various forms of “Dysautonomia”, which can cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “involuntary or automatic” functions of the body that we do not think about or do consciously.  This is things like our: heart rate, blood pressure, digestion,  and temperature control. People living with various forms of Dysautonomia have trouble regulating their body temperature, body systems etc., which can make them feel lightheaded.  Sometimes things occur such as fainting, too high or too low blood pressure, abnormal heart rates (such as bradycardia, tachycardia or both, like I had), malnutrition, and in very severe cases even death can happen.

Please try and remember this or these things when you see someone who appears to look fine or “normal” on the outside.  If they take a Handicapped parking spot, they need it and their Dr’s told them so! People don’t have the HC placards for fun. Please don’t be mean or rude. Don’t say something sarcastic or unkind.  Id rather that you just ask me if you have a question about my disability status. I’m not required to answer you, but I will because I want people to know. You just never know what is going on inside of someone’s body. I hope this bit of information has helped you to understand POTS and Dysautonomia a little bit better than before. In honor of this 2016 “Invisible Illness week”, I hope that this post taught someone out there something about how this/these illnesses can affect someone’s life. If you have a friend or family member with these illnesses, please give them the benefit of the doubt, when they are not feeling well. If they’re exhausted for what you think is “no good reason”, if they’re tired because they were up several nights in a row, due to their pain, or illnesses; please don’t judge. The worst thing that you can say is “well you were up til wee hours of the morning, so it’s no wonder that you’re tired”.  We cannot sleep like you “non ill” persons can sleep.  Just please be kind if we are not always at our best and/or if we have to cancel an outing with you.

Some of this information was taken from the “*Dysautonomia International” website and more was from “*Healthline”. But most of this was my own words, feelings and from my own personal experiences that have happened and that are still happening to me every day. (The information from these sources has * near it).  Thank you for visiting today. Please come back next time, which will be soon. The next post is going to be something positive and something about CRPS Awareness month, “November”. It’s also called “Nervember” by IPain and “Knowvember” by U.S. Pain Foundation.

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