Hello my lovelies!
Where does the time go! When you have a chronic illness or condition ( or two, or three…) there never seems to be enough time for the spoons you have available. Keeping up with the blog, counseling people, advocating, living, (LOL) it gets exhausting, but I have missed you all! Today’s post is focused on Ehlers-Danlos Awareness. May has been designated as Ehlers-Danlos Awareness month, so all month long, I am going to focus on EDS, and try to bring you some extra resources and information to hopefully help any one who is newly diagnosed, or who may just have questions. I am pretty new to having EDS myself, so we will learn together!
According to Ehlers-danlos.com EDS is defined as “A group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hyper-mobility (joints that stretch further than normal), skin hyper-extensibility (skin that can be stretched further than normal), and tissue fragility.” This does not mean you have to have these two specific issues to have EDS. That is a myth, and one that is sorely outdated.
There is a lot of great information on their site, I highly recommend reading through it when you have the time. That being said, like most under diagnosed or rare conditions, there can be multiple different types, with different symptoms manifesting in different ways across the population. As you can imagine, this can lead to a great deal of frustration. Often times, family and friends don’t understand what we are going through, doctors can’t tell us what is going on, our bodies are doing things to us we can’t understand, and all we want are some answers!
As of 2017, there are thirteen sub types of ED, each with their own clinical criteria. This alone can make getting the proper diagnosis a nightmare. These are the current sub types.
Click through the links to be taken to each sub type of EDS to learn more about it. I have Classical, or in the UK, Hyper-Mobile EDS. I suffer from frequent, random dislocations, easy bruising, long healing times, easy scaring, velvety skin, and I look much younger than my actual age. My body hurts all the time. With Classical/Hyper-Moblie EDS, your surrounding muscles have to work harder to support your weak joints, which is exhausting. It can be very hard for someone to understand why you are so tired all the time, when you don’t really do anything!
Together, we can raise awareness and shine a light on this debilitating condition. Never forget my dear zebras, you are not alone!!
A little disclaimer. I will be talking about some new medications I am trying. While they work for me, I am not a doctor. This should not in any way be considered medical advice. Please make sure to speak with your own doctor about any medications you may be taking or are interested in trying for your own treatment plan.
What a whirl wind few weeks it has been around here! I started seeing a new pain management doctor, Dr. Upadhyay, with Keystone Pain and Rehabilitation here in Pennsylvania. ( I will be adding him to our doctors list!) He was AMAZING! When you live with several conditions that are relatively unknown it can be extraordinarily hard to find a doctor that will listen and help you. He started me on Doxepin and Zonisamide, and the changes have been incredible. I have been able to severely cut down on my narcotic usage, and haven’t had to use my wheel chair in weeks. While I always like to share what does and doesn’t work for me, I am not a doctor, and therefore can not give medical advise!
If you have known me for more than 10 minutes, you know that I am a hard core advocate for invisible illnesses. I mainly focus on Chiari and Ehlers- Danlos, not they are not the only ones I work with. 🙂 There are a wealth of organizations out there that are working tirelessly on our behalf to make sure our voices are being heard! I will be listing their links at the end of this post. Now the fun part! What can you do to help advocate for your specific cause? Some are easier than others, but here are some basic tips.
- Start with what you know. If you live with a condition day in and day out, you are more intimately aware of how it affects a person’s daily life than most others.
- How does it affect you?
- What are some things you want people to know about your specific condition?
- What is being done right now to help?
- Have information at hand to back up what you are saying. I carry business cards and “pass it on” cards from Chiari Gear. It’s a good idea to be able to have something at hand until you get used to speaking to strangers about something so personal! Even if its just hand written note cards.
- Be prepared for questions. People are curious by nature. If you start talking about your condition, people are going to want to know more about it. Don’t be discouraged if they don’t listen, don’t take you seriously, or are just flat out rude. Remember step one! Education! You can’t teach people who don’t want to learn. Best to just move on I say!
- Social media can be your best friend. Post E-cards, notes, photos, statistics, ect. Anything to get people talking. Follow other people with your same condition. Work as a team!
- This one is usually the toughest for most. Not because they don’t want to put in the effort, but because it can be physically, emotionally and spiritually draining talking about this one aspect of your life day in and day out as well as living it! Remember what your doing it for!!
- I talk to anyone and every one who will listen to me. I wear Chiari and EDS gear, have purple hair, talk about my scar, tell people why I have to use that handicap placard, explain why I have to use the motor buggy at the grocery when they stare at me because they think I am being lazy.
- Along with my husbands help, we managed to get several bills passed though the PA Senate to recognize September as Chiari Awareness month.
- I sold bracelets and gave cards out to strangers to help spread the story and raise money for awareness education
- I council others with Chiari and EDS to help them better understand what they are going through.
- Biggest of all, I started the blog!
It may seem overwhelming at first. I have been an advocate going on four years now, and I still get overwhelmed. You brain didn’t fall out in a day, so take your time! ( Chiari joke lol) Please take the time to check out these other wonderful organizations! Please tell them lifewithchiari.com sent you 🙂 If you have any questions, or your struggling to get started, you can reach out to me through here on the blog, or via the following:
Chiari & Syringomyelia Foundation
Ehrick Garion’s Act
The Chiari Project
The Ehlers-Danlos Society
Thank you for your patience. You may have noticed lately that my site was down. That was because some lowlife hacker thought it would be a good idea to target a site that’s sole purpose is to help other people… good job buddy…
Any who… I’m back, and I want to talk to you about something that has gotten to me lately, as I am sure it has bothered my chronic illness community. There have been a few stories in the news lately about opioid drug abuse and over prescribing of narcotic drugs. As a person that is reliant on opioid narcotics, it is difficult to read day after day about people who are not only abusing the drugs to get high, but gaming the system to make money and continuing the cycle of dependency. This goes for the shady “pill mill” doctors out there as well.
These people either don’t know or don’t care what their actions cause us who genuinely rely on opioids to get through life. It is a struggle EVERY SINGLE MONTH to meet with a pain management doctor, get to the appointment, go over everything you have ever been on, be drug tested like a junkie, and then maybe get a prescription for enough pain medication to make it to your next appointment. Lord forbid you have a bad month or can’t make it to your next appointment. It’s not always the doctor’s fault. They have to follow the law. I’ve seen the look in my doctor’s eyes when he knows the amount of pain I deal with and there is nothing he can do for me.
I have been though almost every non narcotic pain management option available. A real specialist doesn’t usually put someone on narcotics or opioids right away. There are a great deal of other drug therapies, including injections, that are available. The problem I tend to run into is the treatment is often worse than the problem. At worst, side effects from most of the medications I have tried have made me gravely ill and have landed me in the hospital more than once. At best, they don’t work at all.
Our law makers need to come up with a better way to deal with the opioid epidemic other than what they are talking about now. Putting more and more restrictions on doctors and patients isn’t going to help curb the problem. Just like guns, it isn’t the legal ones we need to worry about. There are a few who are trying to aid addicts in getting the help they need. Senator Camera Bartolotta’s Comprehensive Addiction and Recovery Act is one such bill. If it were to pass, it would go a long way in helping revamp the treatment addicts receive.
Relying on pain medication in any form is arduous. This is not a life we chose. I can’t speak for everyone, but I know there is nothing I wouldn’t do to not have to take narcotics the rest of my life. If you don’t have to take them, don’t start.
If you are an addict, know some one who is, or you think you might need help, please reach out. There is help available. 1-877-923-9204
Healing vibes to you all!
You can now follow Life with Chiari on instagram! @lifewithchiari
Hello my patient readers!
I am sorry for my absence. I have had to deal with some health issues that have been extremely trying both physically and mentally. I haven’t been able to share much with the outside world, but I am ready to share now with chiari family, because I know you all struggle as well.
I haven’t wanted to tell anyone this, because it has been a very private experience between my husband and I. For those who know us, they know that we had tried to have children for a number of years. We stopped after I had my brain surgery. It just wasn’t safe anymore. As much as that sadden us, we decided to throw ourselves into our relationship and our advocating for chiari and eds.
Well, last month I was scheduled to see a new doctor for an issue I had been having that I will cover later. I don’t want to go too much into it, but after that appointment, we found out I had had a miscarriage. It crushed my entire world, and all we did was cry for days. We haven’t been ready to tell everyone yet. Not even family. I know people will mean well and say “oh, you can have another.” but for us, that just isn’t the case. Even if it was, we lost a CHILD. You can’t replace that. It is a hole in your life and in your heart that will never heal, made worse by the fact that we will never have another. I have been having a very hard time processing all of what goes into a miscarriage. So, please be kind and patient with me as my husband and I grieve the loss of our child.
Our other news is, I was diagnosed with a new condition called Systemic Mastocytosis. You can read a little more about it below, and I will also add links at the end. It’s a very complicated condition that we are still trying to learn about. I have had a LOT of testing so far, and will have to have more. Sometime in the next few weeks I will have to have a bone marrow biopsy done to determine if I need to have chemotherapy yet.
I will keep you all updated on what is going on as soon as I know.
Also, please don’t forget that September is Chiari Awareness Month. Unfortunately, I did not have the strength this year to do as much advocating as I would like, and I wasn’t able to pursue a new resolution for 2016. Feel free to share your photos of your purple pride, and your Chiari Walk information so I can help spread the word, and hopefully we can beat last years totals!
I will be adding some links and new doctors to the doctors tab. For more information on mastocytosis and other chronic illness, please keep checking back on the blog, and read up on Chiari Gear. She has a lot of great information about Chiari and other chronic illnesses/diseases along with some great awareness gear!
Thank you for your patience while I work on getting myself sorted out!
Stay strong and Conquer Chiari!
Mastocytosis describes a group of disorders that are caused by too many mast cells in the body. The number of mast cells in the body can increase as a result of some non-cancerous (benign) or reactive conditions. However, certain types of cancers begin when healthy mast cells change and grow out of control.
There are 2 general types of mastocytosis:
- Cutaneous Mastocytosis. This type of mastocytosis involves the skin.
- Systemic Mastocytosis. This type of mastocytosis involves the entire body.
Cutaneous mastocytosis is an increase of mast cells in the skin. About 90% of people with mastocytosis have the cutaneous type. Subtypes of cutaneous mastocytosis include:
- Urticaria pigmentosa. This is the most common type of cutaneous mastocytosis. The main sign of urticaria pigmentosa is the appearance of tan or red-brown spots on the skin. These spots usually develop on the midsection of the body first and then spread over the rest of the body. A person with this type of mastocytosis may also experience nausea, vomiting, and diarrhea.
- Solitary mastocytoma. This type of mastocytosis is more common in infants and children than in adults. It usually causes a large nodule, about 3 to 4 centimeters (cm) in diameter, to form on an arm or leg. This nodule is called a mastocytoma.
- Diffuse erythrodermic mastocytosis. This type of mastocytosis is found most often in children younger than 3 years old. Diffuse erythrodermic mastocytosis may not be noticeable when a child is born, but it can later show up as a rapid thickening of the skin. Symptoms of systemic mastocytosis (see the Symptoms and Signs section) and blisters are also common.
- Telangiectasia macularis eruptiva perstans. This type of cutaneous mastocytosis develops mainly in adults. The most common sign is lesions that do not itch and are smaller than those of urticaria pigmentosa.
Systemic mastocytosis involves internal organs throughout the body, including the gastrointestinal tract, bone marrow, liver, spleen, and lymph nodes. Lymph nodes are tiny, bean-shaped organs that help fight infection. About 85% of the time, urticaria pigmentosa (see above) develops first.
Depending on the number of mast cells in an organ, the disease is classified as either indolent, which means it is slow growing, or aggressive, which means it is fast growing. As the number of mast cells builds up in an organ, the symptoms of the disease may get worse.
Systemic Mastocytosis can become cancerous. The risk of systemic mastocytosis becoming cancerous is 7% when the disease begins in childhood and as much as 30% in adults. Mast cell leukemia involves the blood, while mast cell sarcoma involves the body’s soft tissues.