Guest Blogger: My battle with ME/CFS

Guest Blogger: My battle with ME/CFS

Hello Everyone!
I would like to introduce you to a beautiful, young, chronic illness warrior I recently meet on instagram. Her story is so inspiring, and she has been kind enough to share it with us today. If you would like to know more about Connie and her condition, please follow the links though out, or you can follow her on instagram. She post videos about her day, and what it’s like living with a chronic illness! Welcome Connie, and thank you!
Hi I’m Connie, 19, and I have battled Myalgic Encephalopathy/Chronic Fatigue Syndrome  (ME/CSF for short) for the last six years. There are many different names for these conditions, but I use ME/CSF 🙂
CFS is a persistent fatigue that affects everyday life, and doesn’t get better with sleep or rest. There is a laundry list of symptoms such as, constant headaches, short-term memory loss, muscle and joint pain, difficulty controlling body temperature and many others.  I was diagnosed with ME/CSF in February 2011 after suffering with a lot of symptoms that just didn’t make sense! 
ME is a whole other beast! NORD summarizes it as “An acquired complex disorder characterized by a variety of symptoms and physical findings potentially affecting multiple systems of the body.” As you can imagine, it’s not easy to reach a proper diagnosis. Especially in someone so young.

Living with a chronic illness is the hardest challenge I have ever faced. It’s a constant battle. Each waking moment I feel I’m at war with my body. My mind is full of unrealistic goals, ones I may never get to meet. One of the hardest parts about having a chronic illness is that it let me start with a normal life and in a matter of moments, the life I had hoped and dreamed I would always have was snatched away.

 

A lot of the things that brought me happiness now cause me sever pain and discomfort. For example, being active, keeping fit and being social was a big part of my life. Being with my friends and socializing was a great stress reliever. Being the captain of a football team was the perfect role for me. It was something I love to do. Now, it has become a footnote on a list of things that I just can’t do anymore. My social life, education and job opportunities have dissipated as well.

 

Everything I do requires careful planning and involves consequences. There is no “normal” anymore. It’s unbelievable hard at 19 years old to have to plan my entire day around how well my body is cooperating. After 6 years, I’m still in the process of accepting my illness, learning what I can and can’t do. Being a teenager makes me stubborn by nature. When I go out and don’t listen to my body, I pay the price the next day. Sometimes even that same night!

 

I struggle with accepting that this is now my life. When I ask people this question, they say, “Of course not! No one should have to accept it!”  but I have to. How do I accept this is now my life for the foreseeable future? Another difficulty is what others think and say about me. A lot of people struggle to understand or even believe things they cannot physically see. For instance, if I had a cast on my leg, people wouldn’t have to think twice about how they’d act towards me. That is why we so often label our selves as “invisible illness warriors.” I am not willing to let myself become my illness. 

 

Recently, I have become more open about my disability. I am trying to make others understand is a difficult task. This is why I’ve found it easier in the past to hide my pain and exhaustion because hiding how I feel is less complicated than trying to make others understand how I feel. I’m now ready to open myself up, to try to make others see what I really go through everyday.  was Please feel free to follow my Instagram where I post daily videos about my day-to-day battle @memyselfand_m.e 

 

Thanks again Connie! You truly are amazing to go through what you do at such a young age. If you would like to tell your story, please feel free to reach out to life with chiari on any social media platform!

Much love!

Christina

lifewithchiari.com

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Advocating and how you can help!

Advocating and how you can help!

Hello all!

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.

Education

  • 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?

Information

  • 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!

Hard Work

  • 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:

lifewithchiari@yahoo.com

on instagram

on facebook

Chiari & Syringomyelia Foundation

Ehrick Garion’s Act

The Chiari Project

Conquer Chiari

Chiari Gear

The Ehlers-Danlos Society

Opioid abuse hurts us more than you…

Opioid abuse hurts us more than you…

Hello everyone!

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!

Christy

PS

You can now follow Life with Chiari on instagram! @lifewithchiari

 

 

Return to the blog

Return to the blog

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!

Christy

About Mastocytosis

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

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

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.

 

Understanding My surgery

Understanding My surgery

First off, I had an amazing surgeon. I would recommend him to anyone. He took very good care of me, and took the time to answer all my questions. He also didn’t pressure me into having the surgery.

This is what I had done: Posterior Fossa Decompressiontonsillar resection, cranialcervical fusion, duraplasty, and laminectomy.

Posterior fossa decompression – This is a surgical procedure performed to remove the bone at the back of the skull and spine. The dura overlying the tonsils is opened and a patch is sewn to expand the space, similar to letting out the waistband on a pair of pants. The goals of surgery are to stop or control the progression of symptoms caused by tonsillar herniation, to relieve compression of the brain stem and spinal cord, and to restore the normal flow of cerebrospinal fluid (CSF).  What this means for me is, they took out a part of my skull. They didn’t put it back, it won’t grow back, it will always be gone, and I will always have to be careful.

Tonsillar Resection – A big part of this disease is that the tonsils of the brain have herniated or descended into the spinal column. The resection means that the neurosurgeon burns off or resect the part of the brain ( the tonsils) that have herniated down into the spinal column. What this means for me is not clear yet. It is supposed to help clear up some of the symptoms, but it can cause brain fog, memory loss, balance issues, ect.

Craniocervical Fusion– Occipitocervial fusion refers to a procedure in which the occipital ( back of the skull) bone is fused to the upper cervical vertebrae. This procedure typically involves the use of rigid hardware, typically titanium (instrumented fusion)  Patients usually undergo rigid cervical immobilization following this procedure (cervical brace, halo vest, or custom minerva) until the occiput and cervical bones completely fuse together. What this means for me. I won’t be able to drive. I can’t shake my head yes or no. to look at something, I have to turn my whole upper body. I can’t bend over at all with out exploding pain in my head. I have a hard time eating, walking, talking and swallowing.

Duraplasty – A reconstructive operation on the open dura mater that involves a primary closure or secondary closure with another soft tissue material (muscle, fascia, allograft dura).

Laminectomy – Laminectomy is surgery that creates space by removing the lamina — the back part of the vertebra that covers your spinal canal. Also known as decompression surgery, laminectomy enlarges your spinal canal to relieve pressure on the spinal cord or nerves. This pressure is most commonly caused by bony over growths within the spinal canal, which can occur in people who have arthritis in their spines. Laminectomy is generally used only when more-conservative treatments — such as medication, physical therapy or injections — have failed to relieve symptoms.

I hope this helps everyone understand how extensive our surgery is. It’s not something to be taken lightly!