So…how did the second rally go?

Hey everyone,

It’s Claudia from Providence, RI. For new followers, I’m the founder of the Don’t Punish Pain Rally Organization. I don’t raise money, I don’t accept donations, and the members don’t raise money either. And yesterday we had our second NATIONAL PROTEST!! (APPLAUSE NOW!!!!!!!)

Why did we protest yesterday? Because pain patients have been robbed of the ability to live a pain-free life due to the CDC guidelines implemented in 2016. Doctors are fearful to prescribe and that’s why the Doctors Collaborative was created. That’s a program sponsored by the DPP and it’s for providers only. Be sure give your doc a PROVIDER FLIER when you see him/her because nothing will change until our providers are on board. It’s a confidential setting on dontpunishpainrally.com

Yesterday, we celebrated our second protest that took place nationwide. I thought it was a success…but I always strive for the best that we can achieve as a community.

I, ironically, came out of remission and went to the ER because I thought I was dying (I’m being dramatic) But once I received fluids, Remicade, and pain mediation, I slept and I was ready to protest yesterday. I was sick and I exhaused but there was no way I was going to miss MY protest.

Yesterday, started off a little bumpy but it ended on a great note!! That’s to be expected with any protest.

I would like to thank the thousands that participated in yesterday’s protest.

To see the media coverage that pain patients received is pretty powerful shit.  You know, when you work your ass off, and it consumes you, it takes you away from spending time with your family, and then the big day is here….it’s a euphoric feeling.  And many members cried when they saw their stories being, not only TOLD, but being RECEIVED.

During one interview, I told the reporter, “I think the general public has grown tired of the phrase “opioid epidemic” because the real epidemic is now being acknowledged: and that’s illicit Fentanyl is being shipped in through the US postal service and it’s killing millions.

All the politicians jumped on the “opioid bandwagon” because that’s what they do during the crisis. But the real crisis is now coming to fruition.

Yesterday was our chance to be heard. And we were HEARD (APPLAUSE, AGAIN, PLEASE)

We definitely had some “growing pains” but those are a must when accomplishing a protest of this magnitude.

In a perfect world, I would love to have 10,000 protesters in Washington the same day that Andrew Kolodny’s PROP crew protests. But we are pain patients, many are disabled, live on a small check, and we don’t have the means or the health to travel to Washington…so that’s where Kolodny has the upper hand. But not for long (wink, wink.)

But guess what….yesterday, was all about YOU!! And YOU ROCKED THE RALLY!! YOU PROTESTED WITH DIGNITY!!

Protest is powerful.

Were there problems yesterday? Absolutely.

I know hundreds were disappointed at the lack of attendance but that’s to be expected when you organize a pain patients’ protest. Many of you said, “I was in pain and I went.” I understand your frustration.

I was frustrated because I have advocated for many and they didn’t show up at my protest.  I went out of my way, drove to their doctors’ offices with them. and got them the help they needed. And they didn’t show.

And there’s always sooooo many excuses…but, frankly, I don’t like to hear the complaining so I tune it out. Most that know me know I don’t like the complaining. I think it’s a negative force that just takes you down.

Millions think that others will fix this problem for them. But in this situation, it’s not like that. Because millions need to be heard and that’s why attending your protest is so important.

I received messages from some wanting the “okay” to cancel their protest because it was raining. And I think people wanted me to say, “It’s okay..you can cancel;” but those words wouldn’t come out of my mouth.

You either want to protest or you don’t. But if you don’t, you can’t tell people why your pain is preventing you from attending the protest because everyone involved has pain. So in that situation, you probably shouldn’t vent about your pain because it’s not well received on the FB page. (DON’T KILL THE MESSENGER…THAT’S ME 🙂 🙂

(Obviously, the Carolinas were cancelled due to Flo)

 

You have to focus on what you did receive. And when I was scrolling through the national page today, I saw one media interview after the next and that is some powerful shit. Because let me tell you something, two years ago, that would have never happened. And it’s happening now.

So please don’t be discouraged because not enough people came, or it was too hot, too cold, too little people, too little media….remember: something great always starts with something small.

We organized 80 states…80 STATES…Can you imagine?

Be proud. Be proud. Many of you stepped out of your comfort zone, and that alone, is empowering.

What happens now?

I will focus on getting the Doctors Collab running smoothly and getting Canada/Australia organized. If you’re in either country, FB is a must because that’s how I can organize the best.

When does the US protest again? The next national protest will be the end of January, 2019, date is to be announced, and will have a rain date in place as well.

What’s going to be different this time around?

We will be accepting applications for the role of a contact person. We still start to accept those next week and all the details will be on the website. (what’s required to be a contact person.)

A contact person is the most important role because they need to organize their venues, get media, monitor their FB page, and they need to work with others…zero drama.

There was too much drama these past five months.

All protests in January will take place indoors and permits will be required for all venues. I would like to have 2-3 protests for each state and I think having the protest indoors will alleviate a lot of the issues that we encountered yesterday. Don’t worry about foot traffic because someone will be outside your venue passing out fliers. But for the pain patients, indoors is best.

On behalf of the senior teams members, thank you, thank you, thank you.

I would like to thank Ernie Matthews for running our website so perfectly. I would like to thank our senior team members for returning and for organizing your states as well as other states.

Spread the word, people….because we’re being heard. Doctors, patients, lawyers…they’re all involved, baby!!! It’s our time…

Claudiascreenshot_20180615-144527

 

 

 

2nd Don’t Punish Pain Rally: Provider/Patient take on the government!!

Hello to all my fellow Crohnies/IBDers, and pain patients nationwide!!

I created an organization called Don’t Punish Pain Rally Organization, almost, one year ago today.

Why did I create this? As a person who suffered with Crohn’s since I was a child, a small dose of daily opioids, was introduced into my life three years ago, aided in me achieving remission, in addition to a proactive lifestyle.

Opioids gave me my life back. And millions have relied on them for years. Most pain patients were able to live a life without pain because of opioids.

And then their world came crashing down. The government created what’s called the “opioid crisis.” While our country continues to battle a heroin-fueled overdosing epidemic, our country did not have a prescription pain medication crisis. But it was their QUICK FIX to push their agenda.

Providers have been targeted by the DEA and they’re fearful to prescribe. Many are in prison, many are awaiting their hearings, and, sadly, many have surrendered their license. Why? Because these docs have zero support. Docs rarely communicate with one another and they have no association to support them.

I was shocked to learn that some doctors actually call the DEA on their competition (fellow docs) so patients are then forced to see them.  It’s a business and it’s happening EVERYWHERE!!

What’s the end game? An opioid-free country forcing millions to rely on Suboxone, a drug that rarely offers pain relief. (Google Andrew Kolodny.)

Eliminate the weakest link..the sick people. Take away what they need…their pain medication. Will they fight back?…probably not because if they’re sick they’re stupid and they don’t have the tools to fight back. Then zoom in on the providers and we succeed at eliminating the problem.

HOW DO YOU FIGHT BACK????? That’s easy!!

You can protest on Tuesday, September 18. We have created a website, dontpunishpainrally.com or you can visit us on FB, “Don’t Punish Pain Rally Nat.” Once you’re on the national page, you’ll be guided to visit your state page to find out what’s happening within your state.

Most states have protests organized but many only have a few people attending. Because we don’t raise money, it’s impossible to get the word out to the general public. There are still some states, like New York, that have zero protests, which is a shame. But without raising money, we are incredibly limited in spreading awareness.

If you or a family member are struggling to receive pain medication, you MUST protest on September 18. Patients and providers should be involved as this situation needs to be addressed as a collaborative effort. Without patients supporting docs, we don’t have a chance.

But with protest, we DO have a chance and we CAN get nationwide media coverage.

Please visit our website to find a venue. If you don’t see one, that means there isn’t one…and that’s where you come in. FIND A VENUE!! It could be a CVS…just protest!! Once you find a venue, print your flier, print your press release, and don’t forget to print your PROVIDER FLIER…this is for the providers to join the Doctor’s Collaborative; a place where docs can support one another in a confidential setting. Once you have all your tools, then we will help you get the media coverage you need.

We will prevail, but without protesting, it’s difficult to be heard on a federal level. Several groups are working on legislation but legislation could take years. But you can protest on September 18 and experience INSTANT GRATIFICATION!

Be heard. Be a part of history. Fight back.

(You all remain in my prayers and close to my heart. I would like to thank all the organizations who have covered the DPP organization leading up to this protest and I would like to thank the thousands who have worked so hard on their pages, spreading the word, and reaching out to media. Thank you to all the team members that have helped in organizing the 2nd protest) screenshot_20180615-144527

 

Crohn’s/teens/pain medication bullshit

Well, it’s been a while…. good to be back.

I promised some fellow Crohnies to blog about Crohn’s and raising teens. Let me start by saying, I’ve never seen a meme that says, “I love my teen.”

A few weeks back, when the temperatures reached 120 degrees with 100 percent humidity, I was touring colleges with my 17-year old. It was so f’g hot, that I started to hallucinate, feel confused, dizzy, and I had the urge to throat punch the kid that was touring the campus with us. I found myself getting angry because I couldn’t take the heat another second and I could hear the rumbles start. I told my kid, “I’ve got to get the F out of here before I poop my pants. I don’t feel well at all.”

She replied, “OH, MY GOD…you’re so selfish.” um….huh? I drove “Tish” (short for Morticia) six hours the day before to another college that she’ll never attend.

Well, the nice 13-year old (she’ll turn any day now) said, “Francesca, mom is sick..you’re so mean.” (good kid..she gets a present). I promised the older kid I would make it up to  her and get her nails down after we left the campus. Once we FINALLY made our way back to Rhode Island, I drove “Tish” to the nail place. Now, I think I’m doing something nice, right? I drove her hours, almost threw up on the campus, and now I’m taking her to get her nails done.  But she has this perpetual look on her face, the one you make when you smell something bad. What the fuck are they so miserable about?

So we exit the nail joint and I ask her if she likes her nails and she responds, “Yeah” and we head home. When I got out of the car, I felt shaky and weird. I stepped up to get in the house and I lost my balance…and that’s when the tragedy occurred. Instead of fainting, I fell backwards and stepped on her freshly-painted toes.

She screams, “OH, MY GOD….YOU RUINED THEM.” I actually heard myself say, “Mommy will take you back.” And that’s when my 82-year old mom called my kid a dirty rotten rat (that’s her favorite expression.) My mom said she’s never met kids that were so ungrateful and entitled until she met mine.

I started to explain to the kid that I took Methotrexate the night before…but then I stopped myself. And I thought the following:

A. She’s traumatized from being raised in a hospital but that’s bullshit because she got every toy EVER while I was admitted. And she’s only like this to me.

B. She’s suffered an aneurysm due to the heat because nobody could be that cruel…not even a teen.

C. Genetics prevail and she’s just like her old man.

or D.

She’s an asshole teenager.

I remember, when I was a teen, my mom looked at me and said, “One day, you’re going to have three just like you.”

It all makes sense now. It’s payback time. And that’s exactly what I’m doing. But now I take care of my mom, she lives with me, and she’s on a pedestal…here’s hoping.

Now, what’s going on the pain medication bullshit? Pretty much this: anyone who needs opioids is screwed. Before it was just a pain patient epidemic, but now everyone is screwed. If you get cancer, it doesn’t matter; you won’t get treated. Post-op pain? They don’t care..suffer. If you’re in pain management, you have a 50 percent chance of receiving pain medication. The government needs to make back their millions they put into this fake opioid crisis horseshit agenda and the only way they can do that is by putting the country on Suboxone.

The elderly have been ripped off of their pain meds and are forced into Hospice. People who have relied on high doses of pain meds are committing suicide because they’ve met despair and cannot stand the pain.

I’m afraid for the country. I’m afraid for me. If my illness gets worse, I don’t know what will happen. But I do know pain patients will prevail. But how? We need millions to hire lobbyists and to form one solid organization that’s going to fight until the Senate begs us to stop. Our job: make their lives a living hell by advertising. We need commercials just the same as the anti-opioid zealots have. And then we need sanctions imposed for doctors who don’t treat their patients. Plain and simple. Doctors need to be held accountable. There will be a massive class action lawsuit because these assholes running our country respond to one thing: MONEY!!

I’m definitely feeling defeated but I still have some fight left…you need to have some fight left as well.

Protest on September 18, Tuesday. You don’t have to go to your capitol to be heard; go to a CDC, FDA, CVS, Walgreens, State building, city building, parks…JUST PROTEST!!

Someone will fund our cause who has millions. It will happen. Don’t forget we now have a web dontpunishpainrally.com or visit us on FB “Don’t Punish Pain Rally Page.” Please don’t give up. Find me if you need me.

Remember: you have a friend in Providence, RI.Screenshot_20180312-165238.png

Keep fighting.

Claudia

 

 

For those

Crohn’s/Relationships/Pain

Hello, to all my fellow Crohnies/IBD’ers,

When I went in to Rite Aid today, the girl at the pharmacy asked me, “How’s your husband?”

“He’s great but I’ve never been married.”

You know how you’re voted “Most talented” or “best looking” in high school?

I didn’t receive either title.

I received the: “Most likely to never get married, but have two children out of wedlock, by two different men, both men sharing the same birthday” title.

Say that ten times fast.

But I did fall in love with my plumber, who eventually left….and then came back….and then left again. Relationships are hard. Relationships with Crohn’s is a real fucker.

My ex was there for all the hospitalizations and all the behaviors, as I like to refer to them. With Crohn’s, comes many different personalities/behaviors due to medications.

You have the IV Dilaudid/Morphine/happy behavior: that’s the behavior that causes you to buy things. (I organized a surprise birthday party for my ex and didn’t realize it until one month after I was discharged and somebody asked me the date of the partys`.) That’s the amnesia part of the IV-pain med behavior.

or:

The angry behavior: this behavior stems from the massive doses of Prednisone that you’re put on during a flare. This behavior causes one to vomit obscenities from their mouth because they’re sweating profusely or freezing; or you’re hungry and fat, or you just want to stab him alive. Or “I love you” …one minute….and “I hate you”…..the next minute….or the, “Why do you breath like that?” This is prednisone-induced behavior.

or:

The dehydration behavior: that’s the behavior when you’ve pooped 40-60 times for 48 straight hours and your tongue is stuck to the roof of your mouth and you’re desperate to go to the hospital and delirious from the lack of water, that your body should contain to recite the alphabet. This is the “Oh, my God, I’m so sick, can you take me to the ER?” behavior.

or:

The pain behavior: this is the behavior where people get to see who we truly are, as we lay on the floor, or in bed, writhing about, begging God for help, begging our pets to call 9-11; cursing our piece of shit doctors who won’t treat us with pain medication, because our GI doctors don’t believe that Crohn’s is a painful disease; (I’m waiting for my GI to get Crohn’s),

or:

doctor’s treat us like we’re DRUG- SEEKING ASSHOLES in the ER because our blood work looks good, scans look good, so everything must be fine;

or:

you get treated like a human being in the ER, but once you’re admitted by the 13-year old “HOSPITAL-LESS” (hospitalist), they tell you, “I can’t give you pain meds or I’ll lose my license.”

I’m sorry, you can’t treat a painful condition with pain medication because you’ll lose your license?

Oh, that makes sense. We have hospitals for what again?

Crohn’s is disease that comes with many challenges. I love challenges. But I hate seeing people fight for pain medication. Why should anybody suffer when there’s medication to NOT suffer?

I have a simple solution. You shouldn’t suffer.

Nobody should suffer.

(Okay, people, if you missed the Don’t Punish Pain Rally in April, no worries. On September 18, 2018, that’s a Tuesday, there’s going to be protests in EVERY state. Most states will have, at least, 2-3 protests so EVERYBODY CAN ATTEND. NO EXCUSES!!

Look, the government has created unattainable, unrealistic guidelines that have robbed pain patients the ability to live a pain-free life.

I created the DPP rally because we needed nationwide media coverage. We succeeded. But we need power behind us now. We need numbers.  Join the Don’t Punish Pain Page on FB. I receive too many messages to respond to all of them but I CAN get back to all of you on the rally page, and if I can’t get back to you, another team member will.

If you need me to advocate for me you, just message me via FB, Twitter, Instagram, e- mail.

Thank you for supporting my book “Crohn’s Disease, the other C Word.” I’m awaiting my illustrator to finish “Dotty on the Potty” my children’s book. (A little girl and her struggles with Crohn’s). All proceeds for “Dotty” go to the Merandi Foundation which provides ostomy supplies to families and Uber rides to the ER/hospital.

NOTE: My book is R Rated, as well as many of my blogs

Copyright 2016Screenshot_20180312-165238.png

 

Crohn’s and my recent trip to the hospital

About three-and-a-half weeks ago, I started to experience random body aches. I would wake up in the middle of the night with bad leg spasms. Or I would be training at the gym and have to stop because I would feel out of sorts. I kept blaming my new mattress. I recently put an addition on my house and I was still getting used to it.

I noticed whenever I turned the heater on, I would cough. Or when I would go to bed, I would have cramping in my legs. I had a conspiracy theory: the mattress and the heating unit were trying to kill me. So I upgraded my mattress.

I was out with my mom and Ava when I started to feel out of sorts. And I also noticed I was coughing. I never cough. Ever. Unless I have pneumonia.

I went to bed early on Friday. My 12-year old woke me up and said, “Mommy, your temp is 103.” I told her that the thermometer was probably broken.

I just purchased the fucker two months prior when my mom was septic in the hospital.

How could it be broken? But I told Ava, “Ava…mommy is sooooo tired. I have to sleep.” Ava said, ‘Mom, please go to the hospital.” I told her I couldn’t because I was too sick.

That makes sense.

But I was too sick. I could never make the ride in the car to the ER. Plus, it was Friday night. And we know what Friday night is like in the ER.

The next morning, I stumbled out of bed..or crawled, I should say. I took my temp and it was 104.3. That couldn’t be. I was coughing a lot. Every time I coughed, my head throbbed. My knees throbbed. My hair hurt. But the coughing was severe. I made my way into the shower and almost killed myself because I kept losing my balance. But I knew the importance of shaving me legs should they find me in the shower.

I needed to get two ceiling fans out of the car, before I died, because the electrician was coming to put a fan in my mom’s new room. And then I had to empty my 16-year old’s closet so the electrician could get in the crawl space.  When I got out of the shower, I started to sob. The pain in my head was unbearable. With each cough, I would grab my head.

Fuck this. Someone call 9-1-1.

As soon as they saw me, I remember they masked up. Once I got to the ER, they kept commenting  how high my fever was and my heartbeat was fast. They kept telling me, “Claudia..we’re going to take care of you.”

In my mind, I had a 50/50 shot. It was either going to be a good ER visit or a bad one. I just wanted to stop coughing and the headache needed to subside. I was sobbing. They came to take me for an x-ray. I said, “No way.” I can’t go. I’m too sick. The doctor came in and I said, “GIVE ME SOMETHING FOR THIS HEADACHE.” Poor guy almost pissed his pants. The nurse came in and brought me Morphine. Nope. Didn’t touch it. I continued to cry. They came back in and brought me Dilaudid. Oh, my God, it made the headache worse. Finally, they came in with IV Tylenol and IV Morphine and I could finally assemble a sentence.

About an hour passed and the ER doc came back in and said, “You have bacterial pneumonia. You’re staying.”

Now, being a pain advocate, I certainly didn’t want to die fighting with a “hospital-less,” but I felt so sick. I thought they could save me so I could spend more time with my loving 16-year old that brings me nothing but happiness. (She’s actually been really nice lately.)

I went right into isolation because I also had C-Diff that I left untreated. Once I was in my room, I had my two favorite nurses. They were talking to me. I was shaking. I had rigors. When the doctors would try and talk with me, they all had masks on but I was shaking with so much force, I couldn’t put my words together.

I started to cry again. The pain was so bad. They brought in oral pain meds. I tried to take it and I vomited. I was sobbing at this point. I was hot, cold, my head was pounding, the cough would rattle my brain.” The hospitalist came in and I had a blackout mask over my eyes. She sat on the bed and was holding my hand, rubbing my back. She kept telling me, “We’re going to help you.” I thought I was already dead because I never heard a hospitalist say those words. The nurse immediately brought IV pain meds with more IV Tylenol and I started to settle down. I would fall asleep, then the headache would wake me up. At this point, I had oxygen on and I was getting breathing treatments.

The nurse told me they were moving me to a room where I could be monitored. I started to cry. “Please don’t move this bed.”

At night, I met my new nurse and she was an asshole. She gave me Tylenol and I vomited. She asked me why I vomited. I told her to stop talking because I didn’t like her personality. (It was the fever talking.) They switched over to IV Tylenol and that drug is a miracle. It actually worked better than the IV pain meds.

Day 2, the rigors stopped but the cough got worse. They came in to do blood cultures to test for sepsis. I was really out of it. But I remember doing a live feed for the rally. I kept thinking, “Somebody has to monitor the rally.” I knew the team was watching everything regarding the rally but it was still on my mind.

The doctors were asking about the rally and what I did as a patient advocate. I explained to them what the rally was about. And they just kind of stared blankly. My new nurse came in and said, “Hey, I just bought your book.”

The doctors asked: “What book?” My mom always has a copy on her so she showed them. And I’m sure they saw the chapter, “The Hospitalists.”

Over the next 24 hours, things would improve. The care I was receiving was exceptional. And I kept thinking to myself:

  1. I haven’t had to beg for IV pain meds.
  2. The hospitalists couldn’t have been kinder. They were compassionate.
  3. They inqured about  patient advocacy, the rally, and my book.

Were they being compassionate because I was recognized? Or were they being nice because they were good doctors? To be honest, I lost trust in doctors years ago and I am always on high alert. I’ve done over 400 days in the hospital. I’ve seen a lot of bad shit go down. I want to trust but it’s difficult.

They came in before I left and I told them how wonderful they were. My mom was next to me and my mom said, “Listen to my daughter. You’re going to learn something.” I started talking with them. I asked them to please treat the next patient with as much compassion as I received. I asked them to go to a place of MAYBE before you go to a place of NO when it comes to pain meds. I asked them to remove judgment from their heart as all patients don’t look alike nor do they act alike.  Pain is pain. Don’t add judgment to sosmeone’s pain.

When I got home, I was too tired to take a shower. I fell asleep with those beautiful panties on they give you in the hospital. The following two weeks would consist of lots of naps.

It’s been about two weeks and I’m starting to feel like myself. I always takes notes after a hospital stay. Because of the morphine, I don’t remember a lot of things.

But I remember this: I was treated with compassion.

(NOTE:

Hello to all my fellow Crohnies: I am still awaiting my meeting with the Department of Health regarding the Rhode Island ER Room Compassion Bill. I pray it gets put through as regulation.

Thank you for the amazing work you have all dedicated to the Don’t Punish Pain Rally. This is a nationwide rally that addresses the chronically ill community not receiving adequate pain management due to the overcorrected CDC guidelines. We’re 30 days out from the rally. We started with five and now we have well over 5,000 or more involved. Join the Don’t Punish Pain Rally page if you’re on FB or follow us on Twitter @ DPPRALLY2018. I think we’re going to make history. I organized this rally with a stack of index cards that cost .69 cents.

I am a patient advocate. If you need me to advocate for you, please reach out. If you’re in the ER and you’re NOT being treated with compassion, call me. If you’re upstairs in a room, and the nurses or staff are NOT treating you with compassion, give me aScreenshot_20171122-165659 call. I charge ZERO dollars for advocating.  All I ask if that you pay it forward in return. Do something kind for someone else.

Crohn’s is hard. It’s not an easy illness. If you’re struggling with depression, please reach out to me. It doesn’t matter if you’re male or female…we’ll get through it together. There’s only 24 hours in the day. Sometimes the 23rd hour is the most challenging.

Stay positive and keep fighting.

Remember..you have a friend in Providence, Rhode Island

Thank you for you support

Love Claudia

 

 

 

 

 

 

 

 

 

 

 

 

Crohn’s and ER visits gone bad

IMG_20171120_191649.jpgHey everyone,

It’s Friday night. Yup. Another Friday night. And I’m home. I keep saying, “Next Friday night, I’ll go out.” But then Friday night arrives and I say, “F it..it’s too cold out.”

Last night, I wanted to blog but organizing the nationwide DON’T PUNISH PAIN RALLY leaves me exhausted some days. I’m blessed to have an amazing team working alongside me on the rally. Now, we’ll just keep working our asses off and hope for an amazing rally with media coverage.

Last night, I did advocate for a mom. Her daughter has severe Crohn’s and was rushed into the ER. They were there for hours and this doctor would not give the girl IV pain meds. Before I spoke with the doctor, I said to the mom, “Once you give me the phone, I take over.” She agreed. I stayed on hold until the doctor came in. When a doctor knows you have an advocate, they get right back in the room.

As soon as I heard his voice, I thought, “He’s a prick..a young prick..but still a prick.”

I asked what could “we” do to make this patient comfortable?

“Dr. Prick, maybe you could go to a place of MAYBE instead of a place of NO?”

This went on for about 20 minutes.

And then I lost my shit. I didn’t care. This poor kid was crying her eyes out. It broke my heart.

My voice started to get louder. His voice remained low. He went to medical school. I lived in the hospital for 20 years.

I was smarter. And older. And wiser.

I was winning this one.

He said, “I find you aggressive and over-emotional.”

I said, “I find you heartless and unsympathetic.”

But I let this one slip out of the holster…and I’m not proud:

“You better pray your kid in second grade NEVER gets diagnosed with any sort of chronic illness because you’ll be begging just like I am.”

Ugh…that was so unlike me. But I was pissed. I was tired.

I explained to him, because she was on Medicare, that I would be filing a complaint with Medicare, requesting that Medicare NOT pay the bill, because she wasn’t receiving services that her premium paid for; that a Medicare case worker was going to be notified in six hours, and that I was filing a complaint with every agency because he was not treating this poor kid, according to her diagnosis. I think I even threw in the United Nations/Pain Management bullshit, that means nothing these days, because I was looking at it earlier in the day.

He hung up.

I failed.

One hour later I received a text from the mom. She said, “They’re keeping her comfortable until her surgery.”

Her surgery???? The prick ER doc missed one thing…this poor kid was obstructed. He hadn’t sent her in for an x-ray because her blood work was “fine.”

The mom said she was sleeping.

Thank God.

I thought, for sure, I fucked everything up for her.

Why does it have to be this way? Why are people begging for pain meds in the ER? Why are people committing suicide?

Because the government doesn’t care. We’re a burden. The government wants to eliminate the chronically ill community. They equate sick to poor, poor to dumb.

The healthy people are making the laws.

But we WILL prevail. We just have to keep fighting. Fight. Fight. Fight.

For those that know me, I believe in a proactive lifestyle. I believe in eating clean, working out daily, no shitty people around…but sometimes you just have pain. And the only thing that works for SOME..not all….are opioids.

Let’s not judge because some need opioids and some don’t. We’ve already been judged. But living with Crohn’s or any other illness is already a cross to bear. Stay strong!!

Remember..you have a friend in Providence, Rhode Island. If you need me to advocate for you, reach out.

Stay well, stay strong….

 

Having Crohn’s & caring for your elderly mom

Hey all,

It’s been a while. When I blog, I get to be me: real, raw, and R rated.

When my mom called and said, “They want to do a repeat mammogram” I knew it was bad. When the radiologist came in, I knew by the look on her face, it was cancer.

So..here we are. My 82-year old, extremely healthy, mom, was diagnosed with, what appears to be, the Cadillac of cancers. It appears to be highly curable/treatable.

So my mom decided to sell her house and move in with me. My sister and I, and a few friends, have been moving. And in less than five days, it’s done; the house is on the market and we’re doing some renovations to my home so she can be comfortable.

While I’m moving all this heavy shit at her house, I’m cursing my brother, who’s nowhere to be found.

My family is not immune from dysfunction, that’s for shit-sure. But with every trip I make to the car, I scream, “That mother fucker is home, nice, nice..sitting in his recliner.” My mom hears me. She says nothing. She’s disgusted with her son but not surprised.

Not much shocks my mom and I. My mom lived with me at Miriam Hospital in Rhode Island for 20 years. Every Crohn’s hospital stay, my mom would take my two girls, when she was 70, to swim, piano, school functions, and then visit me. Not many 70-year old women could do that.

She’s so fucking strong. She just keeps going and going.

Now it’s my turn to care for my mom.  She’s never had surgery or spent one day in the hospital, probably because she had to take care of me and my children. One time, when I was in the hospital, I remember thinking, “Oh, my God..who’s going to take care of me if my mom dies?”

Isn’t that selfish?

Honestly, I just have my mom, my children, some good friends, my kids, a few cousins, and my sister. But people have lives, people are busy. And when you have Crohn’s or any other illness, you don’t want to burden people.

As I’m moving all my mom’s stuff, I’m seeing a whole lot of cheap shit. You know why? Because she always wanted me and my girls to have a beautiful home and she left herself with shit. My dad was the same way. They wanted me to have better things than they had.

In hindsight, I took my mom for granted. Every morning, she walks and I would hear her say, “Yoo-hoo” and that would irritate the shit out of me. Boy, I would give anything to hear my mom, outside my window, screaming, “You hoo.”

My mom, would sit next to me in the hospital, watching TV, knitting, while hearing my roommate blow farts out of their asses and she would gag. She would call them “animals” when they would walk around the hospital room with nothing on their feet, when they would eat stinky food, while I was vomiting.

Or she would make friends with my hospital roommates, give them recipes, help them to the bathroom.

My mom helps so many people.

She does Zumba, daily,  cooks/bakes for others, and is always there for anyone. She has many friends but chooses to be with me or my kids. She’s not one for going out with friends. She only went out with her twin or her husband. They’re both gone now.

My mom is my side piece. My mom is my heartbeat. She raised my kids. She fought a custody battle with me. She used to threaten the ER doctors if they didn’t treat me kindly. If my GI had an attitude, she would tell him he’s an asshole.  If she met a hospitalist (HOSPITAL-LESS) who wouldn’t treat me with compassion, she would say, ‘I hope your kid never gets sick.”

My mom is the one who says, “I WANT TO SPEAK WITH THE MANAGER.” My mom is Dotty. My children’s book, “Dotty on the Potty” is named after her.

I forget that my mom is 82. But she is 82. Her body is 82. But, thankfully, she treats her body like a temple, so she’s going to be just fine.

She no longer has to worry about the lawn getting mowed, her boiler getting cleaned, or the crazy mice that would get into the cellar. I swear, that poor woman would get everything in her cellar, except lions and tigers,  after my dad died.

Now..she worries no more.

When I was moving her today, she was sitting in a chair and she looked lost. She doesn’t act overwhelmed. She’s just silent. My mom is never silent and she’s not one to be short on opinions.

But I think moving, renovating my house, organizing the rally, has taken her mind off the cancer part of it. That’s the positive I found in this situation. There’s always a positive somewhere.

So Thursday is the day of her surgery and when she goes to sleep, she’ll see me; when she wakes up, she’ll see me.

My mom is the only person that knows EVERY single thing about me. She’s the only person I trust.

When I advocate for people, she advocates with me.

But I’m scared. When I’m scared, I pray. Praying always makes me feel better. I’m one of those people that believes that God does have a plan.

After my mom’s surgery, she’ll be living with me. I told her once she’s recovered, she goes back to the gym. She’s not going to get old just because she has cancer. No way. She’s going to wake up, put her makeup on, cook her stinky vegetables, and she’s going to resume her routine. Back to the gym/ Zumba she goes.

I told her there’s only one rule: clean as you cook. Her kitchen, when she cooks, looks like a stick of dynamite detonated. I’ll have to work on my OCD..but no promises.

She kept  whatever she wanted. But when she wasn’t looking, I would have my way with the black trash bags.

There’s only one problem: I have to stay in remission. I don’t have a choice.  Today, my hip hurts. My mom saw me grabbing my hip and screamed, “Claud…don’t do any more.” But I have to.

I need my mom to know everything is going to be all right. My dad would say, “Claud….everything is going to be all right.” Those words resonate with me.

And guess what? Everything is going to be all right. She’s going to have the cancer removed, she’s going to take the chemo pill for five years, she’s going to work out, she’s going to look pretty, and she’s going to have her daughter take care of her every step of the way.

I’m a mom, caretaker to my mom, fitness competitor, author, advocate,  activist, and I have severe Crohn’s Disease. And everything is going to be all right.

Love you all

(Thank you for your beautiful words that have been sent to my mom.)

(NOTE:

As I continue to organize the “DON’T PUNISH PAIN RALLY,” I still advocate for people in the ER, hospitals, etc.,  so please bear with me as I try to return messages within the hour.

I need spokespersons for all states.  If you’ve been affected by the CDC guidelines, please attend your rally. If you’re not homebound, drive the few hours and get to your statehouse and support your state’s spokesperson. How? Share the rally on social media, get your local media’s tipline phone numbers for your SP, leave flyers in coffee shops. There’s many things to do if you’re not an SP.

Every morning, at 4 a.m., I work on finding spokespersons.

Somebody, messaged me daily about EVERYTHING she was going to do for the rally. And then she dropped out because she didn’t want to get up early. Asshole.  She’s not even sick. That’s the part that pisses me off. These people come out of the woodwork, they’re going to move mountains, they text you hourly, and then they drop off the face of the earth. What the fuck is wrong with people? Or I had the assholes on the DPP page saying ALL the amazing things they were going to do. And then they said, “I’m gong to have my own rally.”

Guess what? No, you’re not. You’re not going to do shit. You know why? Because there’s a group of people that LOVE to do one thing: COMPLAIN.

But there’s thousands of you that are driven and you’re working your asses off. You know why? Because you’re fighters. And if you’re too sick…I’m going to fight for you. Thank for all your hard work.

Now…LET’S FUCKING RALLY!!