Surviving the Holidays with Mitochondrial Disease

As this Christmas day comes to an end, I decided to do something I haven't done in ages...  Write a blog post.

This is actually really surprising because of how exhausted I am.  However, I wanted to share with everyone what the holidays are like for someone who's chronically ill.  You always hear people saying how difficult this time of year is, how tiring it is, and of course how financially draining it is.  I have written many blog posts about how difficult, tiring, and financially draining chronic illness/mitochondrial disease is.  Now, add the holidays to all of that.

For you, stopping at a store on your way home from work or going shopping on a Saturday is no big deal.  For someone with a chronic illness such as mitochondrial disease, it has to be a planned out event with nothing else on the schedule for that day and most lie.

Think of the spoon theory for a moment.  (Don't remember or haven't read it? Click here to read it again)  On a normal day, every spoon is accounted for.  In fact, in my case, I am going into the negative by the time my husband gets home from work.  So, where does the energy come from to put up decorations, plan out a meal, wrap presents, go shopping, cook a large meal, make sugar cookies with the kids, take them shopping, attend family functions, fix food for said functions, etc., etc.???  Yeah, I don't know either.

So what do those with Mitochondrial disease do do?  We borrow spoons... from the next day and the day after that and the day after that.  Or, we reach deep into the spoon vault that houses the spoons we've saved up for just that special occasion.  Neither one of these solutions works very well.  If we have to borrow spoons, they have to be "paid back" on the day we borrowed them from and the interest is extremely high (i.e. massive body shut down, unable to get out of bed, pain, nausea, vomiting, muscle weakness, etc. etc.).  If we push through it and use what we keep stored for a special occasion, we won't have anything left for said special occasion.  Sooo... my kids have wrapped presents under the tree, but I won't be there to see them being opened because I'm too sick from getting them there.

Too many times people with chronic illness compare themselves to others and what they're doing during the holidays.  Then the guilt comes.  We can't do what everyone else is doing the rest of the year (play sports, exercise, work, clean the house, etc.).  So why would we magically be able to keep up with everyone else during the holidays?  STOP TRYING!!!

Take myself, for instance.  I always tell myself, "One holiday at a time."  That one I'm pretty good at holding myself to.  So there's Halloween, which we're very active in, Thanksgiving, my daughter's birthday in the end of Nov., and then Christmas.  This year, my daughter decided to have her party 2 weeks after her birthday in hopes that more people would be able to come since it wouldn't interfere with Thanksgiving.  So, we did the first 2 holidays followed by my daughter's birthday.  As it was her 16th, I was much more involved than I have been for a few years.  I wanted to make sure she had an awesome birthday because of everything she's been going through.  The birthday party came and went.  Then it was time to work on Chris t m  a  s    s   h     o      p       p ....  BAM!

Yep, that was me hitting a wall.  After many months of doing more than I knew my body could handle and a couple of weeks doing way more than my body could handle, I crashed... hard.  For about 2 weeks I was barely able to walk to the bathroom because I was so weak and felt so bad.  Christmas shopping was out of the question.  Yes, I'm fully aware of online shopping, but even that takes energy when you have to figure out what you can get, how much you can spend, how in the hell you're going to make that amount look like more than it is, what you're giving and what Santa is giving, etc.

After all of that, add in dealing my daughter's teachers who aren't cooperating with her 504 plan, taking care of her while she continues to have seizures even with 2 meds at max dose, a doctor telling me 2 1/2 weeks before Christmas that I have to pay a large portion of his bill or he'll stop putting pain meds in my intrathecal pump, continued family stress, and receiving some very bad news. (God, I wonder why I have been so sick!)  Needless to say, I was rushing around on Christmas Eve to finish shopping and getting things done.

As you can imagine, I wasn't able to enjoy the day today as much as I would have liked.

So...  if you're the family member of someone with a chronic illness like mitochondrial disease, please give them a break during the holidays.  Hell, give them a break all year.  Especially if they are taking care of a sick child too.

If you yourself has mito, POTS, gastroparesis, or any other chronic illness, be sure to follow a few simple rules during the holidays...

1. Take care of yourself!!!  (Notice that that's number 1)
2. Don't compare what you're doing with what someone healthy is doing.
3. Along those same lines, don't worry about what ANYONE thinks. 
4. Ask for help.  (This is a tough one for me)
5. Plan ahead
6. Start early!!!  (don't put yourself in the position I was in this year... start creating lists months ahead of time and pick stuff up here and there)

I hope you all had a great Christmas and had enough spoons to enjoy your day.

Mothering with Chronic Illness

Well, obviously I haven't been up for writing recently. Actually, that's not accurate. I have felt like writing, but have used my spoons on other things instead... like taking care of my girls, attending soccer games, etc.

I have a friend who lives with mito while also taking care of her daughter, who has mito.  On Mother's Day she sent this to myself and a few other mito moms (which means we're either suffering from mito while raising our kids or a mother of a child with mito... sometimes both).  I wanted to share it because it was so beautifully true.  While reading it I felt like she was taking the words right out of my mouth.  So, instead of saying some of the same things on a blog post, I will give credit where credit's due.

Angelique Surguy-Hershey wrote:

You are amazing, beautiful women who struggle every day raising growing children while you are chronically ill (and some of you while your child(ren) are ill too). You know how hard motherhood is more than anyone. You know how amazing it is. You may feel guilty sometimes because you can't do what you thought you'd be able to as a mom at times. You work twice (or more) as hard as other moms and often feel like you come up short. You feel horrible with a plethora of symptoms. You may be in and out of the hospital. You often push on because you are a mom first and sick second. You sometimes fear you may not live to see your child(ren) grow up and worry will they be taken care of. This is a reality thankfully a lot of moms don't understand. Despite how hard it is, despite how your health sometimes suffers, despite your fears, you would never change it. You love your child(ren). You are a beautiful angel! You are amazing! You do remarkable things! Don't ever doubt that! You are as much a gift to your children as they are to you! I am blessed to know so many Super Spoonie Moms. Enjoy this day honoring you because you deserve it more than anyone.

______________________________________________________________

She is a sweet person, a good support, and great with words... like me, of course (the great with words part).  She hit the nail on the head.  Being a mom is one of the hardest jobs, as all of us moms already know. When you add chronic illness, it is extremely difficult.

Those of us with a severe chronic illness are unable to hold a job because of it.  However, motherhood is our constant job, 24/7, sick or not.  Most people call in sick to work when they have a cold.  Motherhood doesn't allow sick days, no matter how sick you are. We have to work no matter how horrible we feel, and a cold doesn't hold a candle to Mitochondrial disease. We push through the pain, fatigue, nausea, muscle weakness, and many other symptoms to make sure our kids are taken care of.  Why?  Because we love our children more than anything else in this world.

We live with constant guilt.  For the most part I am okay with the things that I'm missing out on (running, working, etc.), but of course we all have our days.  What I can't deal with, however, is saying "no" to my beautiful daughters all the time.  My 7 year old doesn't understand.  My 15 year old understands, which helps, but she also remembers what I was like before mito took so many things from us.  Sometimes it's even the little things that induce guilt, like not being able to fix their sack lunch or help put p.j.s on at the end of the day.

We worry that we won't be around for our daughter's wedding or our son's graduation.  Moms without mito or other progressive disease don't have that in the back of their minds everyday.  As we say "no" when our kids ask us if we will play outside, it's not just guilt that we experience.  We also think, "Should I just try to do it and make myself more sick because who knows how much time I'll have?"

To my friends raising a sick child while you're sick also, I praise you.  I praise you. I praise you.  You are my heroes.  I don't know how you do it everyday.  I can barely take care of my kids and they're healthy. One of my dear friends has 3 adorable little boys.  Two of them have mito and the third has some other problem(s). She is taking care of all three without the help of their dad because they're divorcing and he lives out of state. AND... if that wasn't enough... she has mitochondrial disease too.  I look up to her every single day.  She's an amazing mother.

If you are sick and you're taking care of your children who're also sick, IMMEDIATELY after reading this, go treat yourself to something. Examples: Massage, some time alone, coffee with a friend, a nap, a bowl of ice cream, a carton of ice cream, etc.  I am fully aware that you can't just stop what you're doing and go get a massage, but PLEASE do something for yourself, ASAP.

If you're a healthy mother of a sick child(ren) and you haven't done something for yourself recently, do it!  Bare minimum, go eat some ice cream and watch a movie or, better yet, go for a run.

If you're a healthy mother, with healthy kids, give yourself a huge pat on the back and hug your kids.

Happy Belated Mother's Day to all the mothers I know.

Sick and disabled people are...

Today, I'd just like to share a picture.

The picture was created by a woman with Mitochondrial Disease.  She was doing a project in which she's supposed to do a self portrait that makes a statement about society.  The picture below is the result.  It is a very profound statement so I wanted to share.

If you can't see the print at the top, it's a google search that says, "disabled people are". The auto-complete on google gives 4 options...
Disabled people are... annoying
Disabled people are... useless
Disabled people are... rude
Disabled people are... a burden to society

If you go to google right now and test it, you will find that nothing comes up in auto-complete.  She completed the project last November.  Google has since deleted the auto-correct.
Here's an article that mentions the awful things that can be found on google's auto-correct - "Girls and women should be seen and not heard"

The auto-correct feature on google represents the searches used the most.  It is so sad to see those phrases come up as the most common things searched for after "disabled people are".

It's sad, but true.  The majority of people look down on disabled people (no pun intended... but still funny.. ha ha).  We're stared at because we're different.  We're stared at because people are curious.  We're stared at because we're being judged.

We know what people are thinking, because every now and then it's shared...
 
"Why are you parking in handicapped when you're so young and can walk?"
"You can walk, but you're using a wheelchair... Are you lazy?  You're so young and you don't look sick."
"There's another person that I'm supporting with my hard earned money."

If someone is staring at a disabled person, and the disabled person says something about it, who is the rude one?  I'm sure everyone's response is, "Obviously, the person staring".  However, in that moment, it is usually the disabled person who is looked down upon and judged for commenting about it.

I do think that the world is a better place than it was 25, 50, and 100 years ago, but we still have a ways to go.  Judging people for being different is nothing new.  That doesn't mean it should continue.

Black, white, or purple, we're all equal.
Gay, straight, or trisexual, we're all equal.
Jewish, Christian, Muslim, Atheist, or Pastafarian (wiki it if you're not familiar) we're all equal.
Healthy, chronically ill, or suffering from a cold, we're all equal.

Able bodied or disabled... We are ALL equal.

Do NOT judge people because they are different than you!!!

The Hell that Justina is going through

The following is an article by Mat Staver, the Founder and Chairman of Liberty Counsel, and representative of the Pelletier family. If you'd like to see the original article, you can visit www.TheBlaze.com (the link will take you directly to the article).  This helps describe the injustices that have been done to Justina and her family.

The story of 15-year-old Justina Pelletier captured the hearts of many Americans as the horrible story of the young girl’s plight over the past 13 months was brought to light by the media.

Following the advice Dr. Mark Korson, Justina’s treating physician at Tufts Medical Center, Lou and Linda Pelletier took their daughter to the ER at Boston Children’s Hospital. But there, a new doctor, seven months out of medical school, disagreed with her treating physicians and changed Justina’s diagnosis to a mental rather than a physical condition.

When the parents refused to sign a new treatment plan that would preclude them from seeking a second opinion, the hospital called in the Massachusetts Department of Children & Families (DCF) and prevented the parents from discharging their daughter and taking her back to Tufts Medical Center. For the past 13 months DCF has taken custody of Justina, making her a ward of the state and, thus, eligible for research by the Boston teaching hospital.

DCF also obtained a gag order preventing the parents from speaking to the media. Watching their daughter’s health decline and with no progress on the case, Lou spoke to the media. DCF then sought to hold the father in contempt of court. That is when Liberty Counsel came to the aid of Justina and her family.

Within four days after Liberty Counsel joined the case, DCF began to backpedal. Yesterday the court approved an agreement to (1) drop the contempt charges against Lou Pelletier for speaking to the media, (2) dissolve the gag order, and (3) transfer Justina’s medical care to Tufts Medical Center where Dr. Korson, a specialist, had been treating her for mitochondrial disease.

But DCF is still holding Justina as a ward of the state. This is the same DCF that has lost 134 children in the agency’s custody. The children of 134 parents are missing, and DCF has no idea where they are located.

As more of the details of this case come to light, people are becoming increasingly outraged. It is unfathomable that this barbaric overreach by a state agency is taking place in America – and in the city that launched the fight for American liberty, of all places.

As a Massachusetts ward of the state, Justina has been refused access to education. She is denied visitation by clergy, with no allowance for religious observances, including Easter and Christmas.

Her sisters have rarely been able to see her, and her 92-year-old grandparents have not seen her for 13 months. Justina’s parents were only allowed weekly visits for one hour – and that under extreme supervision, including a Massachusetts State Trooper. DCF prevented the parents from even having a cell phone to photograph their daughter.

Under Massachusetts law, prison inmates get up to five visits per week, medical care, and education rights. DCF has granted Justina one visit per week, little medical care, and no education, even though she is just 15 years of age.

Justina Pelletier has been treated far worse than an incarcerated felon by the state of Massachusetts!

Plus, unknown to many people, Boston Children’s Hospital is a chartered teaching hospital and is allowed to conduct medical research and experimentation on children who are declared wards of the state. According to Boston’s Children Hospital’s “Clinical and Investigation Policy and Procedure Manual“: “Children who are wards of the state may be included in research that presents minimal risk… or greater than minimal risk with a prospect of direct benefit.”

  

Justina’s abuse as a DCF ward is unfathomable. No 15-year-old should be forced to live under such conditions!

In January 2013, before she was admitted to the Emergency Room at Boston’s Children Hospital, Justina was involved in ice-skating competitions and was in a private school under an Individualized Education Plan (IEP) that was sensitive to her learning disability.

As a ward, Justina’s deficient medical care has left her extremely weak and confined to a wheelchair. Being refused education, she is now two years behind her classmates.

After learning of the Pelletier’s plight and performing our own background investigation of the case, I flew to Boston to represent the family in court against the contempt charges directed at Lou Pelletier for allegedly breaking a court-ordered gag order.

The media scrutiny and legal proceedings have caused DCF to reconsider their course of action and begin to back away from the abusively hard-core stance it has taken on this matter. But make no mistake, DCF must be held accountable!

More than a dozen Massachusetts state legislators blasted the Department of Children and Families for “breaking up” the Pelletier family and decried the ill-advised imprisonment of Justina Pelletier. They are now calling for the House Committee on Post Audit and Oversight to launch a full-scale investigation into DCF’s handling of the case.

The idea of a medical facility removing a child from a loving family – a family in which there is no history or evidence of abuse of any kind – is a chilling thought.

This poor girl and her family have been through hell. DCF should be held accountable for this flagrant violation of its authority and abuse of government power.

Free Justina

I was just telling someone about my blog and sending them a link when I realized that it's been over a month since I posted.  Then I realized something else... I have not posted on my blog about something that I have been very passionate about for the last 3 months that I NEED to share with everyone.  I am so mad at myself for not doing so earlier. I guess I just need to get back into the habit of posting on my blog every couple of weeks again.

For the last few months I have been very involved (as much as I can) in supporting a family who has been going through hell for over a year.  Justina Pelletier has been held hostage and tortured for the last 387 days.

It's a bit of a long story, but here's the cliff's notes...

Lou, Linda, and Justina Pelletier

Justina Pelletier is a 15 year old girl from Connecticut who was diagnosed with Mitochondrial Disease about a year and a half ago by a highly respected physician, Dr. Mark Korson, who specializes in mito and other metabolic diseases at Tufts Medical Center. Justina's sister was diagnosed before she was. In Feb. 2013, Justina's parents, Lou and Linda, took her to Boston Children's Hospital (BCH) because she was not handling a bout of influenza well, as is the case many times with Mitochondrial Disease patients.  The doctors at BCH disagreed with the diagnosis and instead believed that Justina has a psychiatric illness called Somatoform disorder.  They decided to take her off of all medications she'd been prescribed and only treat her psychologically.  Two of those medicines were for dysautonomia (elevated heart rate, low blood pressure, dizziness, syncope, etc.) and one was for the pain caused by mito.  When Justina's parents chose to take her elsewhere for a second opinion, DCF was called and ended up taking custody of Justina. Since then, she has been held at Boston Children's Hospital in the psych unit for 12 months, followed by almost 2 months at a step-down psych facility, where she sits today.  This psych facility does not provide medical care.  They will not even take patients with medical problems.  However, they admitted Justina to their facility.

For the last year, Justina has not had any medical care (not counting psychiatric), education, or access to friends or hobbies.  She has only been permitted to see her parents for 1 hour and talk to them on the phone for 20 minutes each week.  In December of 2012, shortly before her admission in Feb. '13, Justina was ice skating.  She is now completely wheelchair bound.

In addition to being taken off of her medications, not receiving an education, and being permitted to see her family for just one hour a week, Justina has been "tortured" in many other ways.  One of the primary problems Justina has is GI dysmotility.  That was the reason for 4 of the 5 procedures/surgeries she's had that the doctors at BCH thought were excessive, despite being ordered by the doctors at Tuft's medical center. While in Boston Children's Hospital, Justina was made to sit on the toilet for 2+ hours at a time to get her to go to the bathroom because they think it's all psychological.  The people "caring" for her have not flushed her G tube, which is necessary daily. Want to hear more about the abuse and torture she's received?  Watch Justina's dad, Lou Pelletier discuss it HERE.  (If you don't like Glenn Beck, get over it because he's the first national reporter willing to interview Lou.  This isn't about politics.  It's about Justina.)

The Pelletiers have now been to court too many times to count.  For a long time they were fighting this battle on their own.  Then the mito community and a few other concerned parents got involved.  With the mito community being as small as it is (it is a rare disease after all), we weren't getting very far.  That's not for a lack of trying, though.

Many months ago the judge overseeing the case placed a gag order on the Pelletiers, DCF and BCH.  Because of that gag order, Lou and Linda have been unable to talk to the media about the case.  After Justina had been out of their care for over a year, he finally decided to break the gag order and suffer whatever consequences came with doing so.  Lou was ready to do whatever he needed to to get his daughter back, before it's too late.  That is why you can see interviews with Lou all over the place now.

Because of the national coverage Free Justina now has thousands of supporters.  Everyone is pitching in to help.  I believe that the public outrage over this case has made a difference.

As I mentioned above, Justina is currently at a step-down psych facility near Boston, MA, an hour and a half from the Pelletier's home in CT.  At the Feb. 24th hearing, the judge ordered Justina to be transferred to a foster care facility in Merrimac, MA., 2 hours from the Pelletier's home.  Luckily, due to the pressure of the public, that didn't happen.  Justina is still at the psych facility.  While we don't want her there, we really don't want her in foster care.

The most recent news is that 2 Massachusetts reps have created a resolution to release Justina.  A total of 16 reps are backing the resolution as of right now.  The next informal Mass. House of Representatives session is Wednesday, March 5th.  The next court hearing is scheduled for March 17th.  So now we wait.

At age 30 I was diagnosed with Mitochondrial Disease. Prior to getting sick I was an ER nurse and an avid runner.  I know what this disease does to a person. Living with an illness like this is very difficult and very isolating.  I cannot imagine having to go through this without my husband and kids. Justina is a 15 year old child who is going through it without her family to comfort her and help her through it. As the mother of 2 girls, 15 and 7 years old, I also can't imagine losing custody of one of my children for over a year just for trying to get her the best medical care possible.  

Parents and patients should not be punished for requesting to seek a second opinion.  We should not be punished for being very involved in our child's care and worrying that a specific doctor or medical facility is wrong.  Doctors are human and make mistakes too. How is it that in America parents are not allowed to seek a 2nd medical opinion without repercussions???  Are we not allowed to choose which grocery store we want to go to or which massage therapist to see?  Then why is it a crime to request a different doctor or medical facility?

Want more information?

You can read a more detailed version of the story on the Boston Globe's website here.

Many people are saying, “There has to be more to the story that we’re not hearing.”
- There is NOT more to this story or "another side." Many experts and reporters have dug into this story with the same questions and found this horrific nightmare to be TRUE. The Pelletier's are a good family who are desperately fighting for their child to be back home...before it is too late.

Want information about Justina as it happens?
- For up to date information as the story unfolds, like Beau Berman's facebook page, reporter with FoxCT. He was the first reporter to release the story to the public and keeps up withe everything that happens.
Here’s a link to that page -https://www.facebook.com/BeauBermanFOXCT

Want to see all 19 reports by FoxCT about Justina Pelletier since Nov. 18th?
- Visit - www.foxct.com

Want to know how you can help?

- THE MOST IMPORTANT WAY YOU CAN HELP - The Pelletier's have been financially drained fighting this for over a year now. PLEASE DONATE at www.freejustina.com Anything you can donate will help! Even if it's just $5!! Thank you!!

-Keep hashtagging ‪#‎FREEJUSTINA all over social media (facebook, twitter, etc.)!! Add links to articles about Justina. We need to keep this fire burning! Please don't let it burn out!!
SHARE! SHARE! SHARE! SHARE! Spread the word!!!

-Join the Facebook page "Free Justina Pelletier from Boston Children's Hospital" at  www.facebook.com/groups/freejustina/.  This is where you will find all the chatter surrounding this case.

- There is a phone call campaign to notify all people involved, no matter how much or how little. Visit www.callsforjustina.com to find an updated list of who to call to help free Justina.

- Please sign the Whitehouse petition at Whitehouse.gov
For those of you worried about the government having your name, email, & city...you think they don't already have that info? Please help! We have a long way to go still! Share it all over!

- You can also sign the petition at The Petition Site


If you have any questions, don't hesitate to comment here and I'll do my best to answer them.  Don't forget, no anonymous comments.  Sorry!

Thank you, as always, for reading.  And, most of all, thank you for taking the time to do one or more of the things listed above to help get Justina home.

What does sick look like?

There is a lot of discussion regarding people who are chronically ill "looking" sick.  People who aren't sick tell us that we don't look sick all the time.  I hear from people with POTS/dysautonomia, mitochondrial disease, and others who're disabled from different medical problems that they have heard that statement.  We get looks when parking in handicapped parking.  We have problems getting disability.  We have difficulty getting support from family and friends.

That leads me to one question...

What, exactly, does sick look like? 

This is my favorite

Does someone with diabetes look sick?  They have a lot to deal with everyday.  If they don't take their insulin at the right time, eat the right foods, take too much insulin, take too little insulin, exercise too much, etc. they can wind up in the hospital.  But by looking at someone with diabetes, can you tell?  They may have an insulin pump or scars from all of the needle sticks but you can't see those things if they're dressed.  Are they sick?


Does someone with congestive heart failure (CHF) look sick?  They get short of breath with activity and can have swelling in their legs and feet. They could go into the hospital at any minute. But by looking at someone with CHF, can you tell?  While clothed you can't see the swelling and you can't "see" shortness of breath.  Are they sick?

What about Multiple Sclerosis?  People with MS can have a wide array of symptoms, many of which occur in mito as well.  They, many times, have to use a wheelchair to get around.  But, without the wheelchair (or even with the w/c), can you tell?  Can you see the pain, numbness, and tingling?  Can you see the bowel and bladder problems?  The muscle weakness?  Are they sick?


And how about Mitochondrial Disease?  People with mito have a wide array of symptoms, just like those with MS.  We have extreme fatigue, muscle weakness and pain (many times severe), slow or no GI motility (movement), problems with vision or hearing, failure of the autonomic nervous system (which causes a wide array of symptoms itself), and many more.  Many of us have to use a wheelchair to get around, at least if we want to get very far we do. (I'm included in that group.)

...and a lot of alcohol and some acting
classes and I'll be sick for the next
2 days.

Due to my illness I have a port a cath for IV fluids and an intrathecal pain pump implanted in my back, both of which stick out and are visible when I don't have a shirt on. I have a scar of my leg from the muscle biopsy, two large ones on my back from the pain pump, and a small one above the port.  I also use a wheelchair to get around. In addition to all of that, many people with mito have a G/J tube (feeding tube).  Aside from the wheelchair, none of those things can be seen with my clothes on.  Anyone with Mitochondrial Disease could get ill and be in the hospital any minute.  But by looking at someone with mito, can you tell?  (Evidently not since I've been told many times that I don't look sick, despite using a wheelchair.)  Are we sick?

So, if none of the people with diseases mentioned above look sick, what exactly does sick look like?  If you're sick does that mean you always look pale?  Do you have to be missing your hair?  Do your eyes have to be sunken in with dark circles underneath?  Do you have to be emaciated?  Do sick people have to frown and look miserable ALL the time?  Do you have to be so sick that you can't get out of bed 100% of the time?

I've felt this way before.

If the answers to those questions are all "yes", then that means that you're only sick if you are actively dying or going through severe chemo and radiation due to stage 4 cancer.  If neither of those are true, then you must not be sick because you don't look that way.


Everyone needs to learn that it is almost insulting to say "You don't look sick" to someone who is sick and feels sick every day of the week.


And in case you need a reminder of the other things not to say to someone with a chronic illness...

You'd be surprised how many times I've heard these statements or something similar.

Sorry for all the pictures... I just couldn't choose.  :-)

I'm back... kind of.

Well, after a LOT of thought and consideration, I have decided to start posting on my blog again.  However, things are going to change a little, as I have changed... a lot.  Many of my posts were there to update people (friends and family) of my condition.  However, as I have learned that people's love is, many times, conditional and sometimes faked, I will no longer be posting to update anyone on my current condition.  The people who really care, will find out because they live with me or talk to me regularly.  They can just ask me in person.  Now, there will, of course, be discussion about how I'm feeling or the ways this disease is affecting me.  That's what this blog is all about.  However, I will not post for the sole purpose of updating people.

On the other hand, many of my posts have been written and posted for the purpose of educating others about Mitochondrial Disease, dysautonomia/POTS, and the ways those diseases affect me.  That is the reason why I'm going to blog again.  I have had quite a few people email me or comment on my blog saying that it has helped them over the last couple of years.  The other day I came across one of my blog posts on Pinterest. (and no, it wasn't someone I know)  I think that's what made me finally decide to start posting again, after going back and forth about it for the past month.  I am not going to let a few former family members words keep me from helping others.

Unfortunately, I've had to make another change.  Awhile back I changed my comments settings so that I moderated them before they could be posted.  However, I've learned that that's not enough.  A former family member was using the anonymity of the internet to say unsupportive and hurtful things to me.  So, because of that person, I have had to disable the ability to post anonymously.  Because she is too cowardly to say those things to my face or even just using her name on the internet, I believe that those comments will stop if I disable the anonymous posting.  I cannot and will not deal with someone being unsupportive and hurtful.  So, I am sorry that everyone else has to deal with signing up for a service they might not want to sign up for since I'm not allowing anonymous posting.  It's another case of one person ruining it for everyone else.

So, welcome, or welcome back.  I hope everyone's having a good, spoon-filled day.  If not, I understand and I hope you have a good day soon.