A global community for parents with chronic pain and illness!

Postpartum Pampering. Impossible? I think not!

Most women partake in some sort of prenatal pampering, but what about postpartum?
Having a baby sucks. Most women are in labor overnight and go through hours upon hours of excruciating pain and physical exertion during childbirth, not to mention the emotional upheaval that comes with having a tiny new life that depends on you for their very livelihood. On top of all of that, your body goes through extreme changes in the hours during and after childbirth. Estrogen levels plunge, replaced with prolactin and progesterone surges, preparing your body to nurse as well as return it to it’s pre-pregnancy state, as well as causing weepiness and mood swings.  There is little time for a new mother to rest after birth, even in the hospital.  Nurses, doctors, pediatricians, registrars, and visitors flood into the room in a steady, stressful stream.  And, of course, your new baby has to eat every couple of hours! As a rule, brand-new mothers tend to feel completely overwhelmed, both physically and emotionally.  If anyone needs stress relief and a little pampering, it’s a new mother!

The thought of taking time for oneself may seem a little crazy, if not completely impossible, in the weeks after having a new baby.  If I didn’t injure my neck and shoulders during the birth of my 2nd baby, little Lucy, I would have never googled “postpartum massage,” and never had the soothing, much-needed break that I got 5 days after her birth, when a trained postpartum massage therapist (Jessica of “Don’t be Knotty“) came to my home, and while my baby slept, gave me a massage.  Yes, in my home, and yes, it was as amazing as it sounds! At that point, my nerves were still too rattled, and my baby was still too new, for me to consider venturing out with her to get a massage at a business.  A good postpartum therapist will be sensitive to a new moms crazy schedule, her intense fear of leaving her baby, and the many sensitivities and pains she is having in her body. Although no longer pregnant, I laid on my side during the massage, as I was still sporting painful rock-boobs from the massive oversupply of milk that often comes that first week after childbirth… as if we need any more pain at that point!  My massage therapist diffused a essential oil blend called “balance,” and I felt soothed immediately.  She also focused on areas which are often stressed during childbirth; neck, shoulders, arms, and lower back.  The best part was that my child was there too; as a new mom, she was on my mind 24-7, and I know that if I had left her at home with a babysitter, there is absolutely no way that I would’ve been able to relax.  My therapist had told me that if I needed a break to tend to my baby, it was totally fine; another sign of a good therapist! As it turns out, my daughter slept the entire time! She is already showing signs of being an achiever!

I was also introduced to the use of essential oils for postpartum problems and even baby.  Dealing with intense anxiety, as well as a colicky infant during the first several weeks postpartum, I made liberal use of “balance” and “wild orange.”  I diffused them in the nursery during the 4 am feedings, which made a huge difference for both my frenzied state-of-mind as well as my daughters.  When I developed a clogged milk duct, I used lavender which relieved the pain (lavender is also great for soothing a fussy baby!).  There are oils you can use to increase milk production (basil), soothe sore nipples (myrrh), treat thrush and diaper rash (Melaleuca).  That is just a sampling of some uses for essential oils postpartum; a wonderful option for nursing mothers, when medications are often not recommended or even dangerous.  Still pregnant? There are hundreds of uses for oils during pregnancy as well.

It may not seem like much, but the massage and aromatic oils were extremely comforting during those first few weeks of craziness that is the postpartum period.  Selfish? No way. Anything that can reduce stress, give mom a little break, and soothe are well worth it; both for mom and for baby.

Don’t be knotty massage therapy and essential oils
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Addiction intermingled with chronic pain hell. Well-done “Cake.”

 

Cake,” starring Jennifer Aniston, does an excellent job of illustrating how easily one can slip into a true mental addiction to narcotics. The most widely available “treatment” for chronic pain in the US is the use of narcotic pain medication. The patients are often miserable and desperate, and the medication is potent and feels…good.  Is it any surprise that there is such a massive problem with narcotic pain medication addiction in the US?  Our aging population has a high rate of chronic disease, we have widespread access to healthcare, and our treatments are almost entirely pharmaceutical in nature; all in all, the perfect recipe for widespread addiction.  In reality, as well as in Clara’s case, the lines between true need and addiction are rarely as black and white as policy makers or the media would have us believe.  It’s obvious that Clara is in severe, often unbearable, pain.

Courtesy cakemovie.net

credit cakemovie.net

The kind of pain that can greatly diminish your ability to think clearly, be rational, or make strong decisions.  In one case, she can’t sleep due to pain and takes an extra pill, in another case she doesn’t want to talk about a tragic event, but in both cases she is in extreme discomfort, and she didn’t have to think very hard to come up with a “solution.” The problem is that it isn’t really a solution; for either the pain or the mental anguish caused by the pain.   The physical pain breaks through the surface, the effects only last a few hours, and its just as difficult to think clearly on narcotics as it is off of them.  As for the mental anguish, Clara’s hallucinations about Nina, which she only experiences after taking too many pills, clearly illustrate the futility of the medication in helping her Psychologically.  In Clara’s case, it became clear that the pills were doing more harm than good, and the only thing left for Clara to do, when she realized that neither suicide nor swallowing dozens of pills every day wasn’t working for her, was to truly face the pain.  But, that also leaves Clara with no options for treatment save physical therapy and maybe a support group.  Again, the lines aren’t black and white; there is no right or wrong, or “one size fits all” solution to the medical use of narcotics.  Responsible, controlled, and supervised use of pain medication can make the difference between having a life and just surviving. But, it can also lead to a long-term, life-destroying addiction.  It’s a terrible burden for both doctors and patients alike to have to weigh the risks and benefits of its use.  But, until there are more effective treatments for chronic pain, the issue will continue and most likely grow.  Well done to “Cake” for bringing the story of chronic pain and its screwed up reality of intermingled anger and addiction; an all-to-common daily reality for millions of Americans, to beautiful and realistic life.

Tweet me! Just copy and paste: Cake, Addiction, and Chronic Pain http://www.parentswithpain.com/?p=448 @parentswithpain

The portrayal of anger and irritability were also very well-done.  Look for another post on that topic coming soon!  

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Top 10 ways parents know they’re having a flare

You know, besides the mind-blowing pain and moderate feelings of deathwishiness. 

Yes, another top-ten list.  I apologize, but I couldn’t resist. Also, I’m having a flare! You wouldn’t expect me to actually type an entire blog post with my sausage fingers would you? ; ) Hope you enjoy it!  Apologies for the men out there…  Hopefully you can still relate.  We are, after all, still in the same [life] boat!

1) You aren’t quite sure if that shower was 2 days ago, or 5.

2) When you open the washing machine, you find a mildewed mess resembling clothing, and you have no idea how long its been in there.  You promptly close the lid.

3) You can’t form coherent sentences, and have lost the ability to count. *This was added several days after writing, after another parent pointed out that there was no #3!

4) You have been wearing the same sweatpants and Uggs (ok, whom am I kidding.. off brand Uggs) for 3 days, including work, and you don’t care in the least.

5) When its finally time for bed, you find yourself singing joyful tunes like “Hallelujia!” or, even make up your own, for example, my go-to flare song is: “Won’t you take me to, COMFY town? won’t you take me to, COMFY tooown!” (You know, as opposed to “Funky.”)

woohooo! Bedtime!

6) 1 hour later, you’re still awake, and you have no inclinations toward singing, whatsoever.

7) Your first thought upon waking is simple “NO!!.  Now that I think about it, that meeting with the company president at 9 isn’t that important. Screw it. SNORE”

8) Your children are surviving on Spaghettios, ramen, and (if its a good[er]) day, macaroni-and-cheese.  (As if anyone actually had the energy to BOIL. Please.); Your spouse is scouring the kitchen like a ravenous dog.

9) You find yourself realistically considering if its really necessary to brush your teeth. or eat.  or actually move for that matter.

10) Your dream evening involves 9 things: a heating pad, a Snuggie, a 200mg Celebrex, and 6 pillows.

One week ago I was wearing heels and make-up to work, sewing, playing piano, keeping my home clean, occasionally forgetting to take my medication, and feeling pretty darn good.  Now I am pretty sure I got hit by a truck while I was sleeping, and they forgot to leave a note.

Want to tweet this?Just copy and paste! Top 10 ways parents know they’re having a flare! http://www.parentswithpain.com/?p=423 @parentswithpain #spoonie #fibromyalgia #mecfs

 

Got kids? Check out my new childrens book on Chronic Pain and Fibromyalgia!

 

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Top 10 things only people with Autoimmune Disease or Fibromyalgia would Understand!

I originally posted this on my first blog, potomacfallsmama.com, but I thought it made more sense here! Enjoy and I hope you get some laughs 🙂 It is the best medicine after all!

 

1) When you wake up in the morning, you feel more like a dizzy 2×4 than a human being

2) “Jump out of bed” =  lol

3) You are Psychic : You know when it’s going to rain or snow before the weather channel

4) At least once, a sick spouse or friend has said to you “well at least you’re USED to this! I feel awful!”

We get used to it now?!

5) At least one medical professional has advised you that all you need to do is “get more sleep and excercise'” to feel better. HA!!  Bonus if you have been informed that its “all in your head”.


6) Whenever you see a Lyrica commercial, you can’t help laughing the ridiculous  “amazing results” they promise.

Lyrica Commercial that is a tad more honest about the horrible side effects.  They still don’t mention that the benefits only last about a month for most people.  }:o(

happy-women-running_151161516
Not.

7) When you are able to speak in full, complete sentences with no grammatical or vocabulary errors, and maybe even some wit or humour thrown in, you stop and think “wow, did I just say that?! woohoo!!”

8) You can’t drink an alcoholic beverage without falling asleep within 10 minutes

9) The first 3 hours of the day are still technically called ‘waking up’

10) You understand what is important in life; the little joys, the small successes… like going to the store without feeling like you’re going to pass out, wearing high heels without pain, or having just one pain-free hour in a week.

Thank you SO much for reading; I hope I made you smile at least once =D


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Got kids? Check out my new childrens book on Chronic Pain and Fibromyalgia!

Want to Tweet this? Just copy and paste!: 

Top 10 things only spoonies would understand. #spoonie #mecfs #fibromyalgia #chronicpain @parentswithpain http://www.parentswithpain.com/?p=418

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Talking to older kids about your chronic illness

girl_upsetWhen your kids are younger, they are more willing to accept things the way they are.  They question less, and are happy with simple and brief explanations for why a parent is sick or in pain.  But once they get older, starting around age 7, simple explanations no longer cut it.  On top of that, as a child heads into the teenage years, the parent/child relationship becomes more complex, not to mention the childs increasingly complicated emotional repertoire!  Your once joyful, helpful, and cuddly child may start rolling her eyes, shutting down, or even getting angry at the mention of your pain or illness- leaving you wonder how on earth to approach the topic with them.  Or, your child may feel guilt over your condition, being unable to shake the idea that it’s their fault, or acting as caregiver and reversing the parent/child roles.  However your child handles the stress of having a parent with chronic pain or illness, communication is always key.  Here are some tips to help your family navigate the stress-ridden waters:

1.  Communicate. Create a safe environment for kids to be honest and open with how they feel.  

Does your child get prickly, sarcastic, or say hurtful things to you about your condition?  Instead of reacting the natural way- defensiveness- take a deep breath and take it as an opportunity to talk.  Ask them why they feel that way/said what they said (perhaps “you seem to have some strong feelings about that, why do you think it makes you feel angry?”), and make open-ended conversation starters like “it must be hard to have a mom/dad that seems to be sick all the time, huh?”  Additionally, speifically tell them that it is OK for them to tell you anything they are feeling, even if it could be perceived as hurtful.  Remind them that as long as they are being honest and telling you something in good faith, you will respect them and won’t be angry.  For example, if you have to use a cane, park in a handicap spot, or use a wheelchair, they may feel uncomfortable or embarrassed when they’re with you in public, but don’t want to hurt your feelings by telling you.  These feelings are totally natural for teens and kids who are working very hard to develop their identity, and they can’t really help it.  You can’t help use the cane… but at least its out in the open!  Along the same lines, it’s important for you to tell them the truth.  Are you taking a medication that can cause side effects like fatigue, mood swings, or memory problems?  Tell them about it, and why you have to take it.  Do you have to miss the soccer game because its at 8 in the morning and you just can’t get up that early?  Explain how much you want to be there, and make it clear why you can’t.  If you talk openly about your condition, it will show your kids that its ok for them to talk openly about it as well.

2. Educate. Understanding the nature of your illness breeds sympathy and less stress. 

Many of us try to shelter our children from the realities of our condition.   It’s may be appropriate to be vague for little kids, but once your child gets to the tween or teen years, it is important for them to have a clear understanding of your condition.  In addition to giving them a better understanding of WHY you hurt and what to expect in the future, it will do two additional things; give your child something to be angry/frustrated at besides you, and secondly, have it blatantly spelled out that this isn’t their (or your) fault.  Find some easy to read, reputable resources online, like the mayo clinic page on your illness.  Better yet, get them pamphlet or book on the subject; this may reduce random internet searching which could lead to misinformation.

3.  Community.  Feeling alone never helps.

If you’re like me, you may have spent years feeling totally alone in the world, and not knowing a single other person with the same condition as you.   I am now active in several online communities where I’ve met wonderful people living with the same condition who have kids the same age as mine.   This experience was life-altering. If your child is really struggling with your illness, it could help to introduce them to a child, or group of children, their age who also has a sick parent, perhaps children of your own friends.  If they’re old enough, joining a Facebook group or something similar can give them a safe place to vent to someone besides you, and ask questions.  The “Kids with chronically ill parents” group is a new FB group option!

4.  Get help if your child is really struggling.

Although stressful, most kids won’t need outside help coping.  However, a small percentage of kids may.  Warning signs of potential problems include anxiety, sadness, and difficulty relating to peers, sleeping disorders, changes in appetite and school troubles (cms.carepages.com).  If your child is struggling, don’t ignore it and assume everything will turn out fine- take them to a qualified therapist, ideally someone experienced in chronic illness and caregiver support.

5.  Make time to have fun.

There are always ways to have fun and spend quality time with your child, no matter how difficult things may be.  Make time to spend alone with them, and focus on something besides your illness.   If you can’t leave the house, you could play a board/trivia game, watch a special movie, learn a new craft, order take-out, make pop-corn or bake, watch silly cat videos on youtube… lots of options!

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Talking to older kids about #chronicillness http://www.parentswithpain.com/?p=409 @parentswithpain

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Fibromyalgia: symptoms may include pain, fatigue, and resentment

Part 1 in the “Parent with Pain” series; Julie Luckett Shore; JulieUnfiltered.com

 

If I had had full-blown fibromyalgia before having kids, I probably wouldn’t have Rachael and Zoë, my 6 and 3 year old girls.  It’s an unnerving thought, one I try to reserve for only special occasions…such as the girls screeching at each other like feral cats because they’re fighting over who gets to play with Twilight Sparkle. Being a parent is hard enough without adding pain so awful that you feel like vomiting and exhaustion that makes your eyes burn and feeling like your internal organs are being smeared down your insides as they’re dragged down into your feet.  It’s not fair, to any of us, that I can’t be the mother I’d like to be.  It’s not fair that they don’t have a mother who always enjoys taking them outside because of how much it drains me.  It’s not fair that, on some days, they don’t have a mother at all because I’m stuck in bed.  It’s not fair that, sometimes, I resent the hell out of them.

It’s my dirty little secret that they don’t know and I rarely talk about with anyone.  Sometimes I have a meltdown and risk exposing it.  I melt down when I’m seized by pain or crushed by exhaustion or desperate because of low blood sugar or all of the above, because that’s the moment they become the loudest, neediest, most selfish, inconsiderate brats on God’s good earth.  But it’s important that they never know how much I truly fail them.  Rachael mustn’t know that I sometimes resent her for not being more mature and self-sufficient than she ought to be.  They shouldn’t know that I sometimes resent them for crawling up in my space to snuggle, (jabbing me with their elbows as they crawl, which isn’t at all excruciating) when all I want to do is lay on my heating pad and close my eyes, read, or stick in my earbuds and watch Doctor Who.  I’m still working on not resenting Zoë for not allowing me to have a good night’s sleep for 2 years because she would be up all night screaming and/or forcing me to rock her to sleep and sleep in the rocking chair.  The stress of that time, I’m certain, precipitated the severity of my fibromyalgia.

All these negative feelings and experiences make all the good times with my girls all the more precious.  I take hold of the happy moments throughout the day and save them for later.  They help remind me just how awesome and worth it all my girls are, when running out the door screaming seems like a perfectly reasonable option. Tonight I’m sure I’ll focus on the wonderful day I had with Zoë at a local farm today while I’m exhausted and she’s losing her damn mind because she’s sleep happy.  Even though I’m laying on the couch, body completely wrecked from tromping around in mud and climbing tall hills to help Zoë go down the slides, I’d do it all again- and again and again and again.  Feeling like I’ve been beaten with a baseball bat is worth holding your child’s hand and listening to them say, “I love spending the day with you, mommy.”

 

Julie Shore

Julie with her daughters, Rachel and Zoë

Julie Shore is a stay at home mom who lives in Northern Virginia with her two girls, Rachael and Zoë, and husband, Mike.  Fibromyalgia moved in during the summer of 2011; it’s a terrible houseguest and refuses to move out.  Julie is a geek, enjoys the culinary world, and tends to go overboard when throwing a party.  Julie disengages her filter and blogs over at http://julieunfiltered.com

 

 

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If we have to suffer, lets not bring our children with us!

The children of people with invisible illness suffer quietly. As soon as my son, now 4, began to communicate, I tried to explain, in words that he could understand, why mommy was unable to play as much as he wanted me to, why I couldn’t stay awake longer than a few hours, and why I grimaced from pain so frequently. How can one explain to a young child, when this is his “normal,” that I wish things could be different for him? That he has done nothing wrong when I am crying. That sometimes, I desperately want to get down on the floor and play, but I literally CAN’T.

The guilt of raising a child under these circumstances is overwhelming. I often force myself to smile, play, and be strong for him. To walk him a mile and a half to the playground and back, only to lock myself in my room in tears of exhaustion upon arriving back home. To play catch, legos, playdoh, color… all of the joys of childhood, joys that take so much energy. Once, after putting him to bed, I left his room and immediately laid down in the hallway and cried; exhausted and overwrought with guilt. “I’m not doing enough. I can’t do enough. I will never be good enough for him.”

eBook and Paperback versions now available

eBook and Paperback versions now available

In order to help my son cope and understand my illness, I searched the far reaches of the internet for a childrens book on Fibromyalgia, chronic pain, or even just having a sick parent in general. I found absolutely nothing. Shocked and appalled at the void, I chose the obvious solution; I decided to write my own. At first, the plan was just to write this new book solely for my son. However, I could not stop thinking of the millions of other children in the same situation, and the other parents, as desperate as I was. I knew something had to be done to help those families feel less alone in the world, and give them hope. Thus began the saga of “Why Does Mommy Hurt?” Many people ask me how I managed to find the energy and time to write a book, while also living with chronic illness and raising a young son. The answer is… I’m not totally sure! I did have a big help in my TMS (Transcranial Magnetic Stimulation) treatment. Since developing my illness, I have suffered from depression off and on, and tried a myriad of traditional treatments for it, none of which helped much. A doctor finally recommended TMS, and the effect was fast and dramatic. For the first time in literally years, I felt like I could do anything; that I could contribute to the world, and my voice mattered. Two weeks after beginning TMS treatment, I finally begin preparations to publish the book, and I haven’t stopped working on it since! I also had help from my family and friends, especially my father, James G. Miller, who illustrated the book. His beautiful illustrations brought life to the book in ways that I never could’ve imagined.

“Why Does Mommy Hurt? Helping Children Cope with Having a Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Disease” has been a best-seller for several months, and is available on Amazon.com and parentswithpain.com, in both paperback and eBook formats. It is a joyful, yet honest, portrayal of family life burdened with chronic illness, told from the point of view of a young boy learning to understand and cope with his mother’s Fibromyalgia and chronic pain. The story is told in a way that creates natural opportunities for the family to talk about both the symptoms of chronic illness (such as pain, frustration, fatigue, and memory problems) and how they affect family life. Even more importantly, this story puts power into the hands of the children in these families by validating and giving a voice to their feelings, explaining chronic pain in a way they can understand, providing a model for thinking and acting positively, and showing them how they could help a loved one afflicted by chronic pain. This book is appropriate for the families of young children who have a parent or caregiver experiencing any of a wide-variety of illnesses associated with chronic pain or fatigue, such as: Lupus, Lyme Disease, CFS, Depression, Fibromyalgia, Arthritis, Autoimmune Disease, Multiple Sclerosis and many others. It also includes a helpful “tips & resources” section for parents, which provides information and urls to support parents.

Available Now on Amazon and Parentswithpain.com/shop

Want to learn more?  See WhyDoesMommyHurt.com

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Childrens book on #chronicillness and #chronicpain, “Why Does Mommy Hurt?” http://wp.me/p4Cz8M-66 @parentswithpain

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Chronic Pain and Suicidal Thoughts; a Natural Response?

Three years after I was diagnosed with Fibromyalgia, and shortly after being diagnosed with Mixed Connective Tissue Disease, I had my first suicidal thought.  I was in the middle of a flare in my pain and fatigue symptoms, and I was feeling overwhelmed.  The thought seemingly came from nowhere. “Man, I don’t think I can do this anymore” was the general idea.  “This” of course representing the Royal “This,” Life.  It seemed like a perfectly logical, sane idea.  I was in severe pain every day, I was struggling with basic tasks of daily living, let alone going to work and raising my son.  I was exhausted and finding little enjoyment in my life.  After the thoughts became more frequent, I realized what they were, and immediately told my family and sought help.  However, although I have never attempted to hurt myself, or even planned to do so, the thoughts came back every once in awhile, always during a flare-up of my chronic pain.   Despite trying countless medications and therapy, nothing seemed to help– except a reprieve from the pain. I finally find relief in Transcranial Magnetic Stimulation (TMS), which uses a strong magnetic field to essentially “clear out” patterns of depressive cognition in the pre-frontal cortex. [TMS is an FDA-approved treatment for depression, covered by most insurance plans, and is even being researched as a treatment for Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS).]  Thankfully, I am currently free from suicidal thoughts, as I’ve kept up regular visits with therapists and Psychiatrists.

Because the thoughts always seemed to correlate with pain, and none of the medications helped, I recently began to question whether I really did have a “chemical imbalance,” as my doctors told me. In my mind, a better explanation was that I was simply responding naturally to my situation.  I had never experienced depression before becoming sick, and as the symptoms seemed directly connected to my pain, I decided to investigate if I was alone.  Short answer? no.  I asked dozens of other people with chronic pain about their experiences and found shockingly similar stories. Young and old, working and not working, with children and without children, men and women; the only factor that seemed to matter was PAIN.   According to a controlled research study done by Fibromyalgia expert Robert Bennett, 39% of FM patients reported having suicidal thoughts.   One woman I talked even had a clear and logical “suicide plan” that she planned to implement once her pain becomes truly unbearable, or she’s no longer able to care for herself.  This woman is not depressed.   The chronic pain community is suffering from an

And really, why not?  What is so shocking about this information, and why isn’t the medical community, or anyone else, talking about it?  There is such a stigma against suicide, and especially mental illness, in our culture, that it is viewed as almost entirely unacceptable, and no one wants to talk about it.  A local newspaper recently published an article about my story and my childrens book “Why Does Mommy Hurt?” that mentioned my past from suicidal thoughts, and many people were extremely uncomfortable around me after reading the article.  In our culture, it seems to require that one must be truly “out of their mind” to contemplate suicide.  However, the people that I spoke to did not sound crazy at all.   The people I talked to were simply suffering, at the most basic animalistic level; they were in severe, unrelenting pain.  Thoughts of ending ones life seem, in my opinion, a natural reaction to the extreme stress of their situations.  A recent study confirmed my suspicions, and concluded that suicide may be a “consequence” of chronic pain.  Several recent studies show that chronic pain dramatically increases the secretion of cortisol, also known as the “stress hormone,” and not surprisingly, research has shown that people with chronic pain are at a much higher risk for depression and anxiety than their pain-free peers.   Thankfully, this issue is beginning to get some attention from national organizations, like the NFMCPA, but very little is being done in the medical community.  Personally, not one of my doctors has ever asked me if I was having suicidal thoughts or depression.  This is unacceptable, as obviously the chronic pain community is one of the most at-risk demographics for suicide.  I propose that regular monitoring by physicians, suicide prevention support, counseling, and Psychiatric services need to be provided hand-in-hand with pain management, Rheumatological, and other specialties who deal on a daily basis with chronic pain patients.  Treating the physical symptoms without caring for the person as a whole, and acknowledging the immense mental suffering of living with chronic pain is like giving a starving person a bag of airline peanuts.  It might keep them alive, but in what kind of life?

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#chronicpain and #suicide; natural response?  @parentswithpain

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When you need to rest; quiet, engaging self-play activities for your toddler

We’ve all been there.  It’s 7 am, you wake up feeling (as usual), like you were hit by a truck.  You can barely stand up and brush your teeth, and your toddler is jumping up and down, full of energy (jealous much!?), asking you to play with them or worse… watch TV (cue ominous music).  You are still in survival mode, and turning on the TV sounds like a pretty darn good idea!  There’s nothing wrong with a little TV every once in awhile, but making a habit out of it, especially for children under three, can cause attention problems, and take time away that they could be using exploring their environment and being creative.  You don’t have to suffer to give these opportunities to your child; there are hundreds of options for quiet, engaging, fun, SELF-guided play for toddlers.  I’m going to share a few of my favorites!

"Playful Patterns" by Discovery Toys

“Playful Patterns” by Discovery Toys

Pattern Matching.

Pattern games help children learn to distinguish shapes, colors, and set the stage for learning ratios and fractions.  We found “Discovery Toys” original “Playful Patterns” set at a consignment shop for $10; It has easily become MY favorite toy in the house.  The set comes with 50 different cards, and 6 sets of different colored foam shapes.  Each card has a picture, either abstract, or a scene, like a boat, fish, a clown, ect.  The goal is to arrange the shapes to complete the image.  My son is obsessed.  When I’m not feeling well, I suggest he go get it and bring it to my bedroom, or sit by my recliner.  While he plays, I offer suggestions, guidance, and encouragement, and praise.  We are playing together, but its an activity I can do while laying down!  “Playful Patterns” retails for over $50; however, Melissa and Doug have a similar set for under $20, called “Pattern Blocks and Boards.”

Sewing cards.

This an activity that, once your child gets the hang of it, they can do completely on their own.  Sewing cards increase hand-eye coordination, dexterity, pattern recognition, and are the first steps to learning to sew!  There are dozens of options available; gender neutral, like animals, or sets designed specifically with boys or girls in mind.  I got my son a set of different local animals.. turtles, birds, cats, dogs, frogs, ect.  They are brightly colored, and come with rounded shoelaces perfect for little fingers! I couldn’t find the exact set I got online, but again, Melissa and Doug came though with their own “pets” sewing cards, which is fabulously priced at $9.99 and comes with a storage box!

Counting games. 

Anything that teaches number recognition and adding will give your child a leg-up in preschool, and set the stage for success and confidence in Math.  One of my favorites is the  “Go Fish Game with tackle box,” by Fisher-Price.  The child places cardboard fish upside down on the floor, and uses an adorable plastic fishing pole, complete with an adorable worm, with a suction cup on the end, to “catch” the fish.  Each player chooses a colored boat, and “fishes” for fish that match the color of their boat.  Each fish has a number on it, and after “filling” their boat, they add the numbers together to see who “caught the most fish.”  My son is 4, so we have an abacus to help him count the numbers together.  When I’m not feeling well, he catches fish for me as well, and we add the numbers up together.  This game usually is played with me sitting in the recliner with a cup of coffee, and him on the floor.  It takes about 45 minutes to complete the game, and by the time he’s done, my morning meds have kicked in, and I’m ready to get up!

When all else fails: educational, age appropriate tablet apps

Before you succumb to turning on the TV, try educational apps!  We use “Zoodles Kid Mode” (click the link for details and my full review).  The app allows you to create an all-inclusive environment for your child on your phone or tablet.  The app makes it impossible for your child to place phone calls, or purchase anything, it also prevents them from accessing anything for adult eyes only.  You can customize it with apps that you’ve downloaded yourself.  Some of my favorite apps are “Sid the Science kid Science fair,” which teaches the basics of scientific research, and the “Monkey preschool lunchbox” series, which teach math, reading, and science.

Parenting while living with chronic pain may be the hardest challenge you’ve ever faced; but there are lots of resources and activities out there to make it easier on you, and even fun!

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Working with a Family Affected by Chronic Pain or Illness; Tips on caring for the family as a whole

As a 32 year old mother living with severe chronic pain stemming from autoimmune disease. I am unable to clean my house, care for my garden, and I also need a lot of helping caring for my 3 year old son, Jimmy. As a mom, I want to give him the world- take him to interesting places, go on hikes, pick him up and squeeze him.. but unfortunately, I am routinely unable to do many of even the most basic tasks of parenting. If you work for a family like mine, there are many simple things that you can do to truly help them; and earn their deepest gratitude and trust in the process.

Take the children on outings.

Children learn by exploring their environment. When a parent you work for has chronic pain or illness, they are likely unable to regularly do “special” activities with their child, or even basics, like simply walking their child to the playground, or pushing them on the swing,  Make outings and “special” trips – family friendly farms in Loudoun County, museums, markets, fairs, nature walks.. anything that gets the child out of the house and doing something active!  Take pictures on your phone of the child during the outings.  When you’re done; write a short note about the joyful time the kids had, and share photos.  Hearing about their children’s experiences; even if they weren’t able to share them, is something that will be treasured and remembered; for years to come.  Click here for my top 4 “Educational and fun activities for kids in Loudoun,” or if its a rainy day, the top “indoor play places” in Loudoun County.

Teach and encourage organization and picking-up.

Picking up toys is probably the most difficult chore for a parent with chronic pain or illness to do.  Bending over repeatedly can cause severe back pain and spasms. Even if they have a house cleaning service, children, as you know, can tear a room apart in a matter of minutes!  Better yet, teach and encourage the children to pick up after themselves; even 2 year olds are able to help clean up.  That way, you will give the parents a gift that will last! Click here for a guide on how toddlers can help out around the house. *Pulling up weeds may also make a parent weep tears of gratitude!

Educate yourself, listen and support.

Google the condition that the parent has, so you can better understand how to help them.  Demonstrate your support: People with chronic pain and illness often are afraid to be seen as “complainers,” or to be judged to be “a burden,” or “lazy.” Make it clear that you believe their pain is real (chronic pain is often invisible; the parent may look completely healthy). Ask them how they’re feeling that day, and if there’s anything special that you can do to help them. Even if they don’t specify anything, keep asking; once they gain your trust, they will be more likely to open up.  Having someone that truly listens is pure gold to someone with chronic pain or illness.  Support the children. Encourage them to talk about their parents illness; ask them how they feel, and validate them. The children may have feelings of sadness, or even anger.  Read them books like “Why Does Mommy Hurt? Helping Children Cope with the Challenges of having a Parent or Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Disease.” Opening up communication in the family about a parents condition is another gift that could last a lifetime!

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