Strength Lies In Numbers


Let me introduce you to our newest family member. This is our first & only grandson, “Baby Bryce” aka “Bubba”. He was taken by ambulance from the pediatricians office on Friday morning (11-30-18). He was de-stating during feeding. He’d turned blue and his oxygen went as low as 40%. I received a phone call from my very frightened youngest daughter (his Mommy) & then I was sent the photo above, of my sweet newborn grandson in an ambulance. He looked so small and so helpless and that is exactly his his mommy & daddy felt. It is precisely how I felt as a mother and a grandmother. It’s been 5 days……

I want to update you on baby Bryce; but first I want to say what amazing daughters, their in-laws & son in laws we have! When they say “it takes a village to raise a child” I now know the true meaning of this. I also know the true meaning of “strength lies numbers”….. it’s been a difficult time seeing my daughter struggle, weep and see her newborn baby, our sweet Baby, Bryce struggle to breathe and watch his oxygen go down to 40%. Our usual jolly son in law has become serious over these last 5 days. They are living in a nightmare of fear. We all are. But as parents, it’s the #1 fear to feel & be helpless while doing all that you can to be there for your child. All the while, Drs & nurses at Motts Children’s Hospital, are life savers and thank God for their healing skills.

But we have banned together as a family and I admire the love and strength that I’m seeing. We got the sheer joy & chance just a few weeks ago to have a couple of “sleepovers” with our dear, sweet Kiera when her baby brother was born. We went back twice on the last day (we have a kitty at home who’s afraid of most everything & everyone so we chose to make the drive back home to check on her for a few hours) to make sure we had the pleasure of being there when they brought baby Bryce home and to make sure Kiera always felt safe & loved while Mommy & Daddy were at the hospital. We went back for several days to be there for the happiness, joy and to do whatever is needed to keep “my own baby” feeling safe and loved and to help keep her firstborn baby, Kiera, in some sort of routine.

Last Friday morning I heard the fear in my youngest daughters voice. I saw the photo of our beautiful, yet fragile 2 1/2 week old newborn baby, Bryce, being put into an ambulance. My heart was in my throat, my stomach was in knots & tears filled my eyes. This is where I asked God to please make me as strong as I’ve ever been. *(side note: since the majority of my pain medication has been taken away, I’ve literally been sitting in my recliner the majority of every day). I asked for strength so that I could do whatever was needed to keep my youngest daughter, Amy & her little family feeling as safe & good as possible.

I’m so thankful that our son in law, Grant (who is such a great father), has been able to come back at night and wake up with Kiera in the mornings. He’s been able to juggle all of this with great valor! He’s been there for my daughter, his daughter & his son. Daddy’s there when Kiera to wakes up. He’s been there to give her breakfast & 6:30 am lunch at 11:30 am. He puts her down for a nap at 12-12:15 pm.. He then goes back to hospital to be there as well. We’ve been getting there during nap time and we have had the pleasure of having dinner with our darling Kiera. We’ve had the extra special joy of putting her to bed and watching over her as she sleeps soundly.

Grants parents have been there with him and Kiera most every morning and they’ve spent many hours, being there with us and with Kiera, in the evenings. They are awesome people and Kiera adores her Grandma & PawPaw. The past couple of evenings, Grants mom, Kiera & I have hunkered down to watch the “Holiday Trolls” movie. Kiera wanted to be between her Grandma and me, with the blanket over each of us. If Grandma or I had to get up for some reason, she would quickly tell us to “come back” and hunker down with her. She’s so adorable. She’s always saying “huggin” when she wants or needs extra cuddles or reassurance. On Sunday, there was not much going on with a skeleton crew at the hospital and so Grant and his parents were there with Kiera. While we stayed at home & did a few errands & went to a little extended family dinner outing.

Amy has been a champion throughout this ordeal. She’s missing her sweet Kiera and her heart is torn in two places, as only a mother or father knows. So Grant took Kiera Sunday afternoon & is taking her today to see her baby brother and her Mommy. Amy has not left her sons side for even a moment! My eldest daughter, Jessy is a very thoughtful person and she went up to the hospital Saturday and brought Amy an entire brand new outfit so she could shower & change clothes in Bryce’s room at the hospital. She was there several hours with Amy & Bryce during some testing. She had dinner from Panera, delivered to the hospital for Amy, Kiera & Grant. Jessy even brought a unicorn headband for little Kiera. She’s juggling her own family of 4, but she’s been calling Amy several times daily.

Amy’s friend, Sara, went to the hospital & brought Amy and Grant some food & stayed there several hours too.

We are blessed to have the best son in laws and all of their parents as well.

All of us are working together to make sure that Amy, Grant and Kiera are as settled as they can be. We are trying to pull together as one family, while the Drs figure out what’s going in with our dear little Baby Bryce.

Nothing else matters right ggnow, except that this little guy and his Mommy get back home and the “Fab 4” is back at home together again.

Now, I have to add that my soul-mate, My darling husband, Craig, has also been a champ!! He’s been driving the 1 hour drive there in midday and home late at night. He’s offered to get groceries and do laundry (which Grant has already taken care of!). He’s carted our home accessories, my favorite food & drinks back & forth and he’s played and read with Kiera. They adore eachother and his playfulness makes her giggle. He is my rock! I thank God for him every day.

Tragedy can bring out the best or the worst in people. In this case, the best in everyone has been shining through. To my daughters, their husbands & our grandchildren; “We are here for you all, through thick and thin. We will be here for you always. As long as humanly possible.

Tonight when Grant takes Kiera back home and puts her to bed, we will be going to see Bryce and Amy. I can’t wait to hold them both in my arms. We don’t know what is wrong with little Bryce yet. We are hoping it’s some kind of sucking, breathing & swallowing issue that will get better with some Occupational therapy. The Dr.’s are still contemplating a lung issue and test. We will know more soon, I pray.

For now please keep this little guy in your prayers. Please keep his big sister and his Mommy and Daddy in your prayers as well. God made families for a reason. It’s so clear to me that nothing matters as much as the lives that he gives us & that we help bring into this world. Strength truly does lie in numbers. I’m so thankful for those who’ve been surrounding us with love, kind words & positive energy. I’m thankful for the families God has blessed my daughters with in this life.

International Stakeholder Community of Pain Experts and Leaders Call for an Urgent Action on Forced Opioid Tapering | Pain Medicine |Oxford Academic


The aforementioned article proves that hopefully, there of the chronic pain community.

In 2016, Andrew Kolodny, (who is co-Director of Opioids policy Research at Brandeis University), along with a group of Addiction specialists & others, went behind closed doors to “invent” & then Implement the 2016 CDC Guidelines regarding the use of Opioids. These were Supposed to be just guidelines for primary care doctors. But they rapidly became “the law” in the eyes of the CDC, DEA, National News Media outlets, Pharmacies & our government officials. Today we even have legitimate, licensed pain management Physicians, heading for the hills! They’re Not following the Hippocratic oath. These physicians are abandoning patients & putting many at high risk, myself included. The way that the chronic pain community has been treated, has been outrageous.

Please feel free to share this article on social media. Print it out and take it with you to your Dr. appointments. Let’s also share it far & wide through the news media channels as well. They’ve been getting it wrong & now need to help change the hysteria & damage that’s been created.

“We, the under signed, stand as a unified community of stakeholders and key opinion leaders deeply concerned about forced opioid tapering in patients receiving lolong-term prescription opioid therapy for chronic pain. This is a large-scale humanitarian issue. Our specific concerns involve:
— Read on academic.oup.com/painmedicine/advance-article/doi/10.1093/pm/pny228/5218985

Today’s Drug Abusers Did Not Derive From Yesterday’s Patients | Cato @ Liberty


Hello Luvs,

I thought that the best way to pass this article around, was to post the link to it, here in my blog. Please share this with your pain physicians, general medicine Drs. and any and all news anchors, newspapers & Government agencies. This is a very important article regarding the incorrect information surrounding the issue of forced tapering to chronic pain patients. It’s authored by Dr. Singer at the CATO Institute.  Between this article and the one prior,(*regarding the AMA Resolutions); we may have a slight chance. It will take awhile, but chronic pain populations must come together to  fight for our lives. Use the skills and talents that we each have and do whatever is your strongest ability.

The root causes of the present-day overdose crisis are decades-long psychosocial/cultural trends intersecting with the lucrative opportunities offered by drug prohibition. Doctors and patients are peripheral factors.
— Read on www.cato.org/blog/todays-iv-drug-abusers-were-not-yesterdays-patients

AMA Guidelines


Hello Luvs,

I wanted to make sure that you all have heard about the new AMA Resolutions, regarding the CDC Guidelines for opioid prescribing? The guidelines that have been taken as the “word and the law” by many pain management physicians and others.

Those CDC Guidelines are and were supposed to be voluntary and just be what they’re called, “Guidelines”. Doctors, pharmacists and government officials have been turning them into “law”. Many people in the chronic pain community have been negatively affected, including me!

I wanted to post a copy of just the AMA resolutions that pertain to us; the chronic pain community. Below I will have that available for you to print. You should take it with you to each Dr appointment & especially your pain physician. But first let me give you the link to the full AMA Resolutions here: The AMA Resolutions for Chronic Pain Patients

*(The above link is working again)

***Also, I’ve posted just the AMA Resolutions pertaining to the chronic pain patients: Please be sure to print out and take to each of your physicians & especially your pain Physician:

Sending Hope, Light & Peace!

Suzanne

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What My Pain Dr Told Me


Hello Luvs,

I wanted to write to you today to share with you something that I know many of us are dealing with these days. It’s about what happened at my pain management Dr. appointment on 11-8-18. First of all, every 30 days, I have to go and endure this treatment and I live with PTSD. It always rears its ugly head the day prior to my appointment with this Dr. or any new Dr. appointments. I’ll just refer you to my other article “Down the Rabbit Hole” if you need a reminder as to what has occurred up until now.

I arrived at the appointment which was in the late morning this time. I usually go in the afternoon because mornings are difficult for me, with my pain issues. But the past 6 months or so, I’ve had horrible anxiety when I know this appointment is drawing nearer. The closer it gets, the worse I start to feel psychologically and physically with the above symptoms on top of the pain. I decided to make this appointment in the morning because I thought it would not ruin our day so much. Just “get it over with” and be done; get on with our day. But it once again, did ruin my/our day.

I’ve had this pain management Dr. since July 2015, after my other Dr. of 15 years left suddenly. At that time I had been on the fentanyl patch and the lollipops for 10 years. This Dr. told me he would only accept me if I took myself off of the lollipops and I did it. I had to suffer through physical dependence withdrawals. I did it at home with my soulmate, my husband.

I’ve never rescheduled an appointment with him, nor have I ever been late. I’ve never run out of meds or asked for them early.  He knows of every medication that I take or have taken and honestly, I don’t feel like its up to me to have to “remind” him that I sometimes take Fiorcet for Chiari Migraines. He and I had a mutual respect sort of Dr./patient relationship up until April of this year 2018.  But that day everything changed and it turned out to be nothing that I did wrong. He had forgotten that I take Fiorcet and it doesn’t always show up on MAPS (Michigan Automated Prescription Service – *explanation found here*: https://www.michigan.gov/lara/0,4601,7-154-72600_72603_55478—,00.html) because its such a low risk medication and not a high class either.  But whether it shows up on the MAPS is not up to me. Nor is it my fault in any way if it shows up or not, as long as he’s known from the beginning that I’ve been on it for more than 7 years.  This one particular day in April, he started being rude to me for no reason whatsoever. I went to my appointments in May, June and July.  But I was horribly anxious and very “ill” prior to each appointment, due to anxiety and PTSD symptoms.

This last visit was another horrible appointment and was the final one for me. I am done being treated like a criminal or an addict! I’m tired of feeling “put down”! I’ve never smoked or drank; nor have I ever taken any drugs. I received one more short acting script and now I will be tapering myself slowly off of the short acting medication as well. It will be horrible because it’s already horrible. It will be difficult and it’s already difficult.  He lied to me in July, telling me that “in Michigan, Fentanyl patch is illegal for him to prescribe (he is a pain management Dr. and Anesthesiologist MD), unless someone has malignant cancer”. I know this is not true and he told me that “I am smart and should be able to verify this online”.  I checked Michigan law and the fentanyl patch warning on the box. It says only that it is “for chronic long term moderate to severe pain that will not be going away.” If anyone has any idea where I can find this in writing; I welcome that information.

I got a letter from my GI Dr. (*see letter below) because he felt it was dangerous to take me off of the Fentanyl patch. With Gastroparesis, SIBO and Chronic Erosive Gastritis; along with EDS type 4/vascular and more, I am not able to metabolize the long acting oral meds. Believe, me, I’ve tried many things and either was allergic, got very ill, it did not help at all or it had large valleys and spikes. The patch just worked for my pain and it was the best match for me and my multiple co-morbidities.

Yesterday’s appointment he told me that “Chronic pain does not kill anyone”. I told him that I was in my recliner now 16+ hours per day due to the pain. He responded by telling me that my cardiologist should not have put me on Clonidine. I’ve been on it since 2015, but went off of it for awhile in between. He knew this also but apparently it slipped his mind because that must be what’s making me “tired.” But in reality, it’s the pain that’s keeping me down. Also, I only get about 4 hours of sleep on a good night.

My cardiologist told me to take 1/2 of only 1mg at night. He prescribed it for me and said it would help with the physical pain & dependence withdrawals. Thank goodness someone cared enough to help me a bit!

I tried to explain that I had resigned from many activities that I was able to do with the medications. He told me that none of this has to do with the medication for pain being taken away after 14 years. He went on to say that “Susan (you’d think after 3.5 years he’d get that my name is “SUZANNE” not “Susan), you and other chronic pain patients are hostages to the pain medications”. These are the same medications that he was fine with for the 3.5 years I’ve been going to him! He also knew that my history was even longer. I’ve been taking opioids since 2005, in order to have some semblance of a life. But just for the record, I’ll let you know that I tried everything else possible fir 3 years, before resorting to the opioids.

This pain management Dr. has told me all along that he cannot make my pain go away. But he can help lessen the pain by prescribing opioids. When he made the “hostage” comment, I responded with; well “instead , now I’m a hostage to the pain”. Yesterday he told us (my husband & me), that all of his patients still tell him they have pain “with or without the pain meds”. I responded by telling him “Yes, that is true, but I had a life with the meds and I have no quality of life now. The pain medication dulled the pain without ever giving me any kind of “high”. Now the pain is much more sharp, pronounced and at the front of my thoughts. I’m not able to concentrate much or put the pain in another place at the back of my brain.”

I started to explain to him that I have several “Physicians, pain physicians and nurses that are my friends online”.  I added that this past week I was diagnosed after an echocardiogram, with “left atrium enlargement”. I’ve had a heart attack, a CVA and a TIA twice. I have Atrial fibrillation, Sick Sinus Syndrome and a pacemaker since 2003. I’ve never had CHF but that’s what this means. I told him that “chronic pain can kill and under treated chronic pain can make blood sugar and blood pressure rise”, which has been happening to me.  He became very upset with me and started to pontificate about how “each symptom needs to be treated by a Dr. who takes care of that problem.  If my blood sugar is high, I need to go to a diabetes Dr. and if my blood pressure is too high, then I need that addressed by a physician who takes care of that issue. He went on to say that “chronic long term pain does not and cannot kill you.  Only acute pain can possibly make BP and HR etc. rise.” But from Dr. Tennant’s own account in his article (Practical Pain Mgmt. By Dr Forrest Tennant MD , from another article, by Pharmacist Steve Ariens, ( Harmful Effects of Untreated Pain )  and this article that I had written last year (that was also published in Ntl. Pain Report), “Chronic pain can kill” (Untreated Chronic Pain Can Lead to Sudden Cardiac Death ), he is the one who is lying.