After struggling through my 20’s, I was finally diagnosed around the age of 30 with Ehlers Danlos Syndrome. EDS is a genetic disease that effects the connective tissue in the body, with symptoms like Joint hypermobility (loose/unstable joints which are prone to frequent dislocations and/or subluxations & hyperextensible joints), joint pain, musculoskeletal pain, chronic fatigue, migraine headaches, digestive issues, along with a multitude of other subsequent symptoms. For the past 10+ years,
I was prescribed an ever growing myriad of opioid medications to try to combat the debilitating pain I was in. Nothing helped, & in fact my pain just seemed to increase year after year. With my doctor’s guidance I slowly reduced & removed all of the opioids I had been taking & am now just over 1 year opioid-free! My pain is pretty much the same as it was when I was taking the opioids, but at the same time, I am feeling much better ...I have less occurrences of brain fog & my quality of life has simply improved! I have now had 2 specialists call me a “victim of big Pharma”. I know my doctors were only trying their best to HELP me, & they did what they were taught to do. It’s wonderful that we’re now learning more about opioids & chronic pain conditions, but that still doesn’t bring back the last 10 years of my life… my child-bearing years.
Over the years, I’ve made other EDS friends that I usually see annually at an international EDS conference. I’ve witnessed noticeable improvements in several people & when I ask them WHAT it is that they are now doing differently, inevitably it is that they live in a state or country where medical cannabis is now approved & available for use! I’ve had so many conversations with people that have my same disease, & whose pain, fatigue, & overall quality of life have improved DRAMATICALLY by introducing medical cannabis into their lives! We all live in this SAME United States of America, & I am only asking for the same access to these medications that I’ve seen so many others benefit from, by simply residing in another State.
Our daughter Kaitlyn is 5 years old. She has suffered from seizures since she was born but it went undiagnosed until she was 2.5 years old. We have tried many different seizure medications. She started to lose the mobility and intellectual capabilities that she had. She declined to the point of the only thing she was able to do on her own was breathe.
Our Minnesota neurologist had no other pharmaceuticals that he felt were safe for her. He recommended and supported us starting her on cannabidiol. Unfortunately the way the Iowa law is written we were unable to obtain our cannabidiol card so we ended up getting a CBD oil with no THC.
Over the course of the next 3 months Kaitlyn made drastic improvements. Her seizures were reduced, she gained the ability to walk again, she started talking again and many of the things she had become unable to do she started to regain the ability.
Although this oil helped Kaitlyn drastically she needed something stronger which we couldn't obtain because her Minnesota physician couldn't sign for our cannabidiol card. We then had to make the gut wrenching decision to leave our neurologist who knew Kaitlyn and treated the most rare and extreme cases of epilepsy to find an Iowa physician to start to establish care. We found an Iowa neurologist that was willing to take her case. He decided to try yet another pharmaceutical with Kaitlyn. This like all the other medications she had tried didn't help.
On January 23, 2017 her neurologist told us he was out of safe options of medications to prescribe for Kaitlyn. Her subclinical seizures (which are seizures her brain is having that you can't see) were extremely severe. More than 3 times as severe as when she had an EEG in May of 2016. The only option he was left with was increasing her lamictal but he was very doubtful that would help at all. He then agreed to sign a cannabidiol card for us to try this new option for Kaitlyn.
At this point, Kaitlyn has started to have drastic muscle loss on the left side due to how severe her subclinical seizures were. We started her on Haleigh's Hope February 3, 2017 after obtaining our cannabidiol card. Just hours after her first dose her private duty nurses were noticing changes with her. Her constant hand tremors were gone and haven't come back at all since her first day on Haleigh's Hope. She has since then regained all ability and movement of her left side. She is talking much more clearly, she can put multiple sentences together instead of just 1 sentence of about 4-5 words which was her "normal." She has become a more vibrant, happy and motivated little girl. Her sensory issues have drastically reduced and she is attempting things with textures she would have never done prior to Haleigh's Hope. She played in dirt for the FIRST time this past week.
We know that with whole plant medical cannabis Kaitlyn could drastically reduce or even eliminate the pharmaceuticals with harmful side effects that she is still currently taking.
Hi I'm Tom Duncan. In 2006 I was diagnosed with Kidney Cancer and underwent surgery to remove the tumor and my left kidney. Then in 2008 I had my first relapse surgery in July and my second in October. both were on my right lung. Things went well until 2013 when another spot sent to the lung surgeon. Then my Doctor asked if I wanted to try IL2 treatments.
Well for those of you who don't know what IL2 are, they are for one thing, one of most poisonous drugs given to humans. I underwent a whole day of tests to see if I was healthy enough. Then I checked into the Medical Intensive Care Unit at the University Hospitals and Clinics. They give you the drug until your body tells them that you can not take anymore. Then you return after a couple of weeks and do it again. So when it come to dangerous drugs. How can you compare Cannabis to this.
I have been working to bring change to our state and federal laws on medical cannabis for the last three years. I have talked to many elected officials and worked to stimulate their thinking on medical cannabis in a positive manner.
My story began in 1996 when I was pulled into a rubber mill at the Firestone plant in Des Moines. I ruptured three disks in my lower back and damaged nerves to my legs, which lead to fibromyalgia and eventually my having to use a cane.
I was transferred around the plant to various jobs for disabled people until 2000 at which point it was obvious that I couldn't perform my duties and was let go for medical reasons.
I fought for two years to get SSI disability, and have been on disability all this time. My treatment was to give me pain killers and muscle relaxers. This went on for years and my dosages of pain killers kept increasing all the time because my pain level would increase so my med dosages where increased to the point of where I was on 100mg Fentanyl patches (a synthetic opioid that is 50-100 times more potent than morphine), 80mg of OxyContin, and 5mg of hydromorphone.
Even with the massive amounts of narcotics during the majority of this time - I would be in enough pain to where I hardly was able to sleep. So I began using cannabis to ease my pain and help with my insomnia, which it helped considerably. There was a time about 5 years ago when I was unable to obtain cannabis. I eventually reached such a low point in my life, laying in my bed for most of the time and in chronic pain, that I decided that this was just to hard and I decided to end my life. I took 10 or so fentanyl patches and plastered them all over my body, ate whatever pills I had left and drove myself to ledges to die in a peaceful place. Someone found me, called 911 and I was flown to Mercy hospital where I was unconscious for 14 days. It took a month of therapy to get me able to do things on my own again and during my time at the hospital they weaned me off of the narcotics, which is what was best for me, or I probably would have tried to end my life again.
In 2013, I was diagnosed with PTSD after some mental health issues arose but my blood work was soon showing signs of toxicity from the prescribed medications like Lithium, and it was a struggle to find a mental health care provider. Afterwards, I had managed well because I was able to obtain cannabis again and use it for my pain, my fibromyalgia, and insomnia. Soon, I found myself arrested with a 5 year suspended sentence and placed on probation. Prior to sentencing, I went through a drug treatment plan and finally found a mental health care provider who quit within 5 months of prescribing me a variety of medications.
Now, I have yet another mental health provider and between the medical and mental health issues, I am on a cocktail of 12 different medications. One prescription alone costs the insurance company over $1,600/month and it hasn't improved my condition.
I have lived and worked in Iowa since 1983 and I hate the thought of leaving my home and this state, but what options are people in pain, PTSD, mental health issues, fibromyalgia, insomnia, and a great more variety of illnesses left to do? The legislation system can't seem to be able to work together to come up with a plan to help us.
When I was able to use cannabis, I was able to take a lot less prescription medications and was able to get relief. It is my intention to go back to using cannabis if it means selling my home and moving to a state where medical cannabis is legal, because the state of Iowa is so far behind. I feel I am left with no choice.
I have Hashimoto's Disease, which is a condition where your immune system attacks your thyroid. I suffer from chronic pain, major depressive disorder, anxiety disorder, panic disorder, and bipolar. I have pain everyday, my mobility is bad enough I can't go anywhere and I had to sell my business because I couldn't work anymore,
Cannibis oil would improve every aspect of my chronic disease. I can barely walk for the pain. I need to feel better for myself and my family. Cannabis could make a total difference in my life. Please legalize and expand to all chronic illnesses!
Hi my name is Anthony Powell. I am a father of three beautiful kids. I served in the Army, which in result I got PTSD. I also have scoliosis of the spine, which makes it very hard to walk. I also have depression, bipolar, anxiety, and multi personality disorder.
There is only one medicine that has ever helped me with all of these. That would be cannabis. I have stopped taking my prescriptions due to them being very dangerous. They are just another dangerous chemical to stick in your body - just to have it not help with symptoms.
I believe that cannabis should be legal. I mean there are people that are clearly far worse then me and with just a little of this medicine they can go back to living somewhat normal lives.
My name is Jennifer Bockenstedt. I'm 52 years old and have raised three amazing daughters on my own. For the last 7 plus years I've been fighting neuropathy pain do to my spinal cord being severed during back surgery.
I've had hundreds of epidurals, injections, nerve burnings,etc.etc.etc! Ive also had a neurotransmitter implanted in my back surgically, and a pain pump implanted also, but due to the side effects and the damage it caused to my organs I had to have them removed.
When I had the pain pump removed again surgically, I went through several months of severe withdrawal and no doctors knew the correct treatment to to help me through the hell and it almost took my life twice! To this day, I still suffer from acute withdrawal symptoms and am told I may for years...not ok!!!
Now I try to exist without any type of Narcotics or painkillers and I simply don't live...
At this point I don't go anywhere or drive. I'm also diagnosed with severe inflammatory bowel disease, IBS, Gastropparesis, chronic nausea and vomiting, severe depression, severe anxiety, and PTSD, do to surviving a very verbally,emotionally, and physically abusive relationship.
I don't know what else to do. I'm unable to take any of the medications due to damage to my liver etc... at this point being a Medical Assistant and a very social person, this is all destroying me. Everyday I pray for the chance to try the medical marijuana, so that I can very likely get part of my life back. I will be a Grandma in February of 2017 for the first time and my main prayer is to be healthier and to be able to be the Grandma I always wanted to be. I deserve that chance. This is extremely condensed version my story. I would be happy to share even more...feeling so desperate, but refuse to lose hope!
My name is Craig Miller and I’m what you refer to as a caregiver, I guess. I wish I could just be considered a husband and hopefully one day a father.
My beautiful wife Debbie has a genetic disease called Ehlers-Danlos Syndrome. “EDS” is a collection of heritable connective tissue disorders. Either directly or indirectly, Ehlers-Danlos Syndrome is known or thought to alter the biology of collagen in the body (the most abundant protein), which can lead to multi-systemic symptoms.
What this means in Debbie’s case is that her joints are not stable and her tissues are very fragile. She dislocates or subluxes things like her ribs regularly. She wears braces on her fingers so they don’t dislocate doing simple things like writing. Just a bit of pressure anywhere on her body can result in bruising on her skin. It’s been a painful existence for her most of her life. Most people couldn’t deal with the pain and fatigue she deals with daily.
Now what it means for me is I have to watch someone I love suffer every day. The past decade has been particularly rough for us. Her good days were getting fewer and fewer and I had no idea how to help my wife. Medical bills piling up, getting behind on all of our other bills. Making sure I had a job that paid decent and had good insurance. It’s a pretty helpless feeling not knowing what to do or what to say or what not to say. How could I know? I can’t walk in her shoes, I can’t feel her pain all I can do is watch her suffer.
I’ve had people tell me I’m a “good man” for staying with her, which I don’t really understand. I love my wife. That’s why I “stay”. I remember saying to her “in sickness and in health, for richer and for poorer.” I made a promise to love her forever and I plan on keeping that promise.
Has it been hard at times? Can I do better taking care of her?, absolutely, but we’ve made it together so far and we’ll keep moving forward fighting for the right for her to use medical cannabis. We know medical cannabis can help Deb. We’ve met many people in the EDS community that live in states with medical cannabis laws and they are doing amazing. Many get completely off of pharmaceuticals using only cannabis based medications. Every sick or dying Iowan should be afforded the opportunity to use whole plant medical cannabis. Please help my Debbie and thousands of other sick Iowans. Get involved and speak up to our local, state and federal legislators.
Hello my name is Zach Leighter and I am 25 years old. I have been living with Crohn's disease since I was 12 years old. These past 12 years have been full of constant stomach pain, inflamed colon, fatigue and loss of appetite to name a few. Recently my colon became very inflamed resulting in a colostomy surgery.
I have tried multiple biologic drugs administered by IV with no success. I am running out of prescribed "man made" medicines to try. The majority of these biologic drugs have terrible side effects, such as cancer or brain disease, and are extremely hard on your body.
Medical cannabis can help with my damaging inflammation, pain, and loss of appetite without delivering the terrible side effects biologics have. Other Crohn's patients are benefiting tremendously from medical cannabis in their states, I hope our state will follow soon. Having access to medical cannabis will not only change my quality of life, it can help thousands of others in our state.
My name is Diane Larson. My husband and I have five children. Our daughter, Noelle, started experiencing health issues when she was 11. She is 20 now and has been in daily pain for five and a half years. She has been forced to use narcotics most of this time so that she can ease her pain enough to attend school. Watching my daughter endure debilitating pain on a daily basis is horrific. Knowing that there is a natural pain relief option that she is unable to legally try is unbearable. Iowa legislatures need to approve medical cannabis for chronic pain patients this session.
Patient & Caregiver Stories
These stories represent real Iowans suffering from complex medical conditions that need access to medical cannabis right here at home.