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.

 

Chronic Illness Series: Chronic Pain

Chronic Illness Series: Chronic Pain

Hello my dear readers.

I am truly sorry for my absence lately. There has been a lot going on in my world. Lifewithchiari.com has partnered with Bearable Bears to help bring a little stuffed happiness into children’s lives all over the world. I encourage you to stop by their page and sponsor a child if possible. There are a lot of little ones out there who need our help!

As for my lateness in posting…

I have been struggling with getting my pain under control. It is hard for someone who doesn’t live with a chronic/degenerative condition to understand what it is like to live in horrible, crippling pain everyday. This is a great article to help understand what its like. Everywhere you turn, people think you are faking, seeking sympathy or attention, your a drug addict, lazy ect. The crazy part is, if I actually WAS a drug addict, I would have no problem getting the help I need.

There is such a stigma attached to people who live with pain as as daily fact of life. (or with any “invisible illness” for that matter.) We even get judged by the people that should be helping us the most. The medical community. I have struggled with ignorance and outright meanness from doctors and others in the medical community. That isn’t to say all doctors are that way, but there is such a need for education, and for us as a chronic pain community to stand up for ourselves. Who knows us better than us?

On that note, most of you know my struggle with pain management. I saw a new doctor today who is starting me on four new medications:  NucyntaCelebrexNeurontin, and Zanaflex. The doctor didn’t know about my conditions, but he was more than willing to listen to me, and said he is going to do everything he can to help me. I will also be starting aquatherapy, so I will keep you all updated on how that goes!

 

Also, we have teamed up with Chiari Gear to make Life With Chiari t-shirts! All proceeds from the t-shirt sales will go to Chiari Malformation awareness and research. So be on the look out for those with in the coming months!

 

Much love readers!

Christy

 

Chronic Ilness Series – Gastroparesis

Chronic Ilness Series – Gastroparesis

Hello Everyone!

Before I get started on today’s post, I need to give a shout out to a very dear friend of mine. This person, who wishes to remain anonymous, gifted me with the software I need to be able to keep blogging and connecting with you dear readers! As many of you know, I am going blind, and it has become far too hard for me to write posts and reply to emails. I was so worried that I wouldn’t be able to help people anymore, and out of the blue, my dear friend made sure that I can still write, reach out, and advocate for you dear readers! I am extremely humbled by such a generous donation to my cause. Always remember, there ARE good people in the world who only want the best for others!

I hope you have been following my journey on the Chronic Illness Series. You can read my other posts here and here. For those of you new to my blog, welcome! I am glad you are here 🙂 If you have any questions, I am always available. You can find me on twitter or facebook.

Today’s post is one that has touched a lot of us in the Chiari, thyroid and diabetic community.  (I don’t have diabetes, but gastroparesis, or GP, is seen often in diabetics.)  GP is usually one of two types, idiopathic, (no known cause) or due to damage to the vagus nerve. More often than not, GP is idiopathic unless there is a known nerve damage issue. Many of us with Chiari also have severe nerve damage from years of having our brain stem compressed. GP is considered rare, with fewer than 200,00 cases per year. Naturally, there is no cure, but diet and medication can help milder cases. People can and do die from this disease. There have been cases of patients needing feeding tubes, bypass, or having their stomach removed all together. I know your going to ask, it IS possible to live without a stomach. A feeding tube is inserted straight into the intestines, called a Jejunostomy feeding tube.

So what exactly is GP? 
Gastroparesis, literally translated, means “stomach paralysis”. GP is a digestive disorder in which the motility of the stomach is either abnormal or absent. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush food and then propel the food into the small intestine where further digestion and absorption of nutrients occurs. With GP, the stomach is unable to contract normally, and cannot crush food nor propel food into the small gastrointestine properly. Normal digestion may not occur and can cause a build up of food in the stomach.

What are the symptoms of GP?
Symptoms of GP include bloating, nausea, early fullness while eating meals, heartburn, epigastric pain, stomach pain, and appetite loss. Ingestion of solid foods, high fiber foods such as raw fruits and vegetables, fatty foods or drinks, carbonation, nuts, seeds, coffee, caffeine, peppermint and many other foods may cause symptoms. The most common symptoms are feeling full quickly, nausea, vomiting and pain. A person with gastroparesis may vomit undigested food many hours after their last meal. Weight loss occurs often due to not being able to eat or keep food down. Patients are often afraid to eat any kind of solid food for fear of pain and vomiting.

What are the complications of living with GP?
Some of the complications associated with GP include dehydration, malnutrition, malabsorption, undigested food that remains in the stomach hardens and turns in to a bezoar, and an overall decreased quality of life. GP often comes in flares. One day your fine, the next your can’t eat, your throwing up, and so dehydrated you end up in the hospital! If you think you might have GP, contact a Gastroenterologist. It would be a very good idea to start keeping a food log, and write down the foods that cause you problems.

What foods should I avoid if I have GP?
First and foremost, if you have been diagnosed with GP, see a nutritionist. Even if your insurance doesn’t cover one, appointments usually include a free consult. They can help you get the most nutrition out of the foods you CAN eat. Unfortunatly, GP is different for everyone. While one person can handle rice, rice might be on someone else’s avoid list! There is a general list that most GPer’s adhere to, but as always, do what is best for you. Some GPer’s find an elimination diet helpful to rule out what foods give them the most trouble.  Here is a good resource from my personal gasto doctor, Dr. Jackson. This is also a great resource if you have questions about testing and possible medications.

It may seem that I am falling apart from my posts, and maybe I am, but I hope that my Chronic Illness Series is of some help to you dear readers. I am starting to feel a little bit like a walking WebMD! 🙂

So while I can no longer enjoy the foodie life I once had, I do still enjoy going out with friends to new restaurants, writing and developing new recipes, and baking my heart out!

Thank you for reading, and be on the look out for the next post in the Chronic Illness Series, Chronic Pain.

 

Stay positive!

Christy.

 

Loosing Sight

Loosing Sight

Hi All.

Today’s post isn’t a very positive one. I had to go to the eye doctor six times since September. After three pairs of glasses, a failed pair of bifocals, and three eye exams later, I found out I am legally blind. It’s a condition called Cortical Blindness. The part of your brain that controls vision is the Visual Cortex.

Apparently, with all the brain swelling, pressure changes, and surgery, this part of my brain has been damaged beyond repair. My physical eyes themselves are healthy.  As you can imagine, this has been a very overwhelming situation to process. Not only does it affect my life, but the lives of my family, friends, and all of the Chiari community that I counsel on a daily basis.  I’m sure, dear reader, you can understand that I am finding it very hard to be the Positive Chiarian I am known for being.

I have been spending the past week wallowing in self pity, trying to figure out what this means going forward with advocating, writing the blog, and counseling. My eye doctor, Dr. Smith, has been so warm and kind through the whole process. She and her staff have taken an abundance of their time helping me to navigate what I am going through. If you live in Central Pennsylvania, I highly recommend them. Dr. Smith is also helping me to find the help I need to relearn how to do things without vision.

Going through everything that I have lately, my spirit has been in the toilet. I have the dearest friend, Sheryl, who is always available to listen to me rant, rave, cry and laugh. We found each other on the internet, and have never actually met in person!  This is what I emailed to her when I got my final diagnosis.

“Everyone keeps telling me what a strong, positive person I am, and they KNOW I will get through it. I just want to tell them to shut up. Not to be mean, but I just can’t deal right now. If it was one thing, it would be different. But my body is failing me, and now loosing my sight? These conditions have and continue to rob me of so much. I have no distraction now. I can’t really write my blog. My eyes hurt so much anymore I just have to sit with an ice pack or cold rag. I can’t sew, paint, draw, read, cook, drive, walk much, bath or dress myself, talk on the phone, text ect.”

I felt horrible saying these things to her. Sheryl has so many issues of her own and she always has a kind word for me. This was her response:

“…You whine, rant and rave all you want…do whatever it takes to get it off your chest.  And, I know, because this is chronic, you NEED to whine and rant and rave often.  I’m here to listen.  I wish there were some words of wisdom to share with you, but I guess the best thing is to just be here and listen, and let you share with me. I can understand that you no longer want to hear how strong you are, you already know that to get to this point in your life, of course, you have been strong and persevered.  It’s those of us who are ignorant of each and every aspect of your life, who say stupid things, thinking that we are being encouraging…”

Isn’t she amazing? She is so fully of sage advice and so very modest. I felt like a complete arse after reading her email. I truly don’t know what I would do without her!

I am looking into software that will allow me to use my computer without having to see what I am doing, but at this time, it’s a bit cost prohibitive. contrary to what some people think, I don’t get paid to blog. I also never charge any “patient” who comes to me for advice or help. Everything I do is done out of love, and wanting to help others. I know how I felt when I was diagnosed, and there was no information available to me. No one should ever feel alone trying to understand Chiari and everything that goes with it.

What I want to get across to you dear reader is this, no matter what our respective conditions do to us, no matter how hard they try to break us down, make us wish we were dead, or feel like we can’t keep going, know that you ARE STRONG. In the words of my dear Sheryl,

“You already know that to get to this point in your life…you have been strong and persevered.”

 

Stay positive dear readers!

 

Christina

Compassionate Marijuana Use

Hello Dear readers!

I am so sorry for being MIA, but as most of you know, Chiari and EDS can be horribly unpredictable. I haven’t slept or really gotten any rest in about a week. Haven’t been able to eat much due to nausea ect. I did want to share something that I and I know many of you in the Chiari/EDS community have been championing for, it looks like the state of Pennsylvania is going to pass the Compassionate Marijuana Use bill.

Now, While Chiari/EDS aren’t specified on the bill, traumatic brain injury and chronic pain ARE included, which is huge! At the same time, we can submit a petition starting in July 2017 to have other conditions included. This is something I will be working very hard on in the next year and a half to make sure all of us who need treatment can get it, and hopefully expand the bill into other states.

Here is the bill.

Its a little difficult to read through, but you get the idea.

What do you think about this idea readers? Are you on board with marijuana use for pain control?

I am interested to see what the community thinks about this topic!

 

Look forward to hearing from you community!

 

Stay Positive!

 

Chrisitna

Comorbidities with EDS

Comorbidities with EDS

Source

 

  • Fibromyalgia
  • Chronic fatigue, often diagnosed as CFS/ME
  • Chronic Pain of ALL kinds, including RSD/CRPS, arachnoiditis, neuropathies, radiculopathy, neuralgia, fibromyalgia, etc. often invisible on scans
  • MCAD (Mastocytosis or the newly recognized Mast Cell Activation Syndrome aka MCAS – ICD-10 code to come soon hopefully in 2014)
  • Fibromyscular dysplasia (deformity of the arteries, especially leading to the kidneys)
  • Autism Spectrum Disorders (all levels) and related disorders (OCD, ADHD, SPD)
  • Mood disorders, especially anxiety and depression (likely organic in origin and/or secondary with ASD)
  • Thyroid issues (high and low, often auto-immune despite normal TSH “levels”)
  • MS and other auto-immune disorders (RA, Sjogren’s, Lupus, Ankylosing Spondylitis, OA, more)
  • Arthritis of all kinds, especially early onset Oestoarthritis in the spine, neck and hands, but RA common also (really AI also)
  • Irritable Bowel Syndrome (IBS) & proclivity toward constipation, but with quick flips to diarrhea (likely food allergies/MCAD)
  • Incontinence at any age (often from occult tethered cord and/or MCAD or allergy induced)
  • Frequent (seemingly idiopathic) nausea and vomiting (may be from impinged vagus nerve/MCAD/hiatal hernia/gastroparesis/Chiari)
  • Dysautonomia of all kinds, most notably poor temperature and BP regulation (high or low, see POTS below)
  • Raynaud’s phenomon (blood vessel constriction from cold, stress) pronounced “ray-noe’s”) – a form of dysautonomia
  • POTS (Postural Orthostatic Tachycardia Syndrome) – a subset of dysautonomia involving BP drops and syncope (fainting)
  • Hyperadrenergic POTS (aka HyperPOTS) – a subtype of POTS involving more variable BP and adrenaline responses
  • NMH (Neurally Mediated Hypotension) – another form of dysautonomia affecting BP
  • Livedo Reticularis (purplish/white “mottling” on skin surface from likely small capillary spasming)
  • Frequent joint dislocations and subluxations (partial dislocations) or being so-called “double-jointed
  • Mitochondrial disorders and deficiencies
  • Kidney trouble including diabetes insipidus
  • Diabetes miellitus and Metabolic X syndrome
  • Sensory Processing Disorders
  • Tinnitus (ringing in the ears)
  • Insomnia (trouble falling and staying asleep, multiple causes in the EDS patient including pain and hyperadrenergia)
  • Sleep apnea, both obstructive airway issues and Central Nervous System (CNS) Apnea (neurologic in origin requiring a sort of breathing “pace maker”)
  • Cranio-cervical settling (which may cause the CNS Apnea) and attendant neuropathic issues and glaucoma
  • Hypotonia (unusually weak muscles despite “training”) sometimes presenting as “floppy babies”
  • Syncope and pre-syncope (fainting and near fainting) and unusually low BP
  • Dizzyness (with or without syncope)
  • Common Variable Immune Deficiency (CVID) of all kinds leaving us prone to frequent & worsening recurrent infections of all kinds, especially respiratory & UTI’s
  • Interstitial cystitis
  • LymphedemaEdema and angioedema (the latter comes with MCAD triggering usually)
  • Lipoedema (not the same as lymphedema, also spelled “lipedema” in US) an adipose (fat) tissue disorder causing unavoidable weight gain
  • Endometriosis
  • Tendonitis and bursitis of all kinds (aka “soft tissue rheumatism”)
  • Keratoconus or thinning /”pointy” corneas
  • Uveitis (inflammation of hte uvea of the eye, common with ankylosing spondylitis)
  • Varicose and spider veins, often early onset
  • Phlebitis
  • Migraines and headaches of ALL kinds and durations, (often driven by hydrocephalus from MCAD)
  • Food and drug allergies and sensitivities with a lot of paradoxic and unexpected super sensitive reactions
  • Bleeding disorders including Von Willebrand’s
  • Strokes
  • Mitral valve prolapse
  • Aneurysms of all kinds, anywhere
  • Easy bruising often from no apparent cause or injury
  • GERD (weak hiatal sphincters and MCAD can contribute here – the stomach produces acid in resopnse to histamine from food reactions)
  • Gastroparesis (slow stomach emptying) and dysmotility (poor digestive movement) beyond just constipation and IBS
  • Chiari malformation, including occult (hidden) Chiari aka “Chiari Zero” formation (“saggy” hind brain, often protruding through the back skull, but not always)
  • Tethered cord
  • Syringomyelia or “syrinx formation” in the spinal cord (may be caused by long term hydrocephalus)
  • Spondylolysthesis, spondylolisis (misalignment of the spinal vertebrae in various directions – front -to-back, side-to-side)
  • Cranial cervical instability, esp C1-C2 “owl turns” and “bobble-head” issues (trouble keeping head on neck, literally, with resulting neurologic issues)
  • Thoracic outlet syndrome, brachial outlet syndrome
  • Seizure disorders and epilepsy
  • Fallen arches (pes planus)
  • Sciatica
  • Bilateral hip dysplasia (ability to “pop” – aka sublux – hips out and back in easily, which should be avoided!)
  • Cerebral Spinal Fluid (CSF) leaks including CSF rhinorrhea, CSF otorrhea (CSF leaks out nose and ears) or anywhere along the dura (lining of spinal column & brain)
  • Celiac disease and all forms of gluten sensitivity
  • Malabsorption and malnutrition and nutritional deficiencies despite diet and even supplementation sometimes. (Poor absorbption).
  • Electrolyte imbalances (often low potassium)
  • Osteopoenia (low bone density) and osteoporosis (brittle bones), often early onset
  • Scoliosis (deformity of spinal curve) of all kinds including kyphosis (aka “roundback”, forward bent spine)
  • Hiatal hernia (stomach to esophagus sphincter) and all other forms of hernias just about anywhere (inguinal, duodenal, abdominal, etc.)
  • Costochondritis (pain at front rib attachment point to sternum)
  • Chondromalacia (cartilage loss) of all kinds, especially patellae (loss of cartilage in the knees, but can occur elsewhere, e.g. hips)
  • Frozen shoulder
  • Petechiae (dark purplish spots, essentially flat blood blisters under the skin, common in those with MCAD with high heparin levels)
  • Metal and other environmental allergies, especially nickel sensitivity (ELISA testing often helpful, pre-test all implant materials)
  • Diastasis recti, (splitting of abdominal wall along the midline) even in males and unpregnant females
  • Striae aka “stretch marks” even in males and young (prepubescent) females (i.e. not always associated with pregnancy!)
  • Strabismus (crossed eyes) or wandering eyes from likely weak eye ligaments
  • Bruxism (jaw clenching, tooth grinding)
  • TMJ pain and issues, subluxations and dislocations (Temporo-mandibular joint syndrome, jaw alignment trouble)
  • Restless Leg Syndrome (RLS) and leg cramps (often eased by increased magnesium)
  • Neuromas in the feet
  • Plantar Fasciitis
  • Chronically low Vitamin D and B12 levels (caution urged for those with MTHFR mutations with the latter, may need a different form of Vit B)
  • Weak or crowded teeth, many need early or partial dentures
  • Urticaria (hives) and Urticaria Pigmentosa (persistant hive-like patches, part of MCAD above)
  • Hair loss early, and even in women, especially those with signs of MCAD or iron imbalances
  • Deviated septum (misaligned nasal cartilage)
  • Trouble swallowing & choking issues, often neuropathic in origin from CCI, sometimes due to floppy laryngial tissues
  • Esophageal spasms (can extend to anywhere along GI tract also)
  • Skin tears or rips, trouble suturing, would dehiscence (trouble healing post surgery, especially soft inner tissues)
  • Liver problems, including fatty liver and lesions, enlarged liver
  • Enlarged gallbladder & spleen, appendicitis (may be MCAD driven)
  • Vocal cord dysfunction
  • Hearing loss from a variety of causes, some bio-mechanical, others neurologic
  • Diverticulitis and diverticulosis
  • Crohn’s and colitis
  • Leaky gut syndrome
  • Retinal detachment and tears (rips)
  • Keratoconus (“pointy”, droopy corneas)
  •  Dry eyes and blepharitis (bacterial eyelid infections), as well as retinal tears and more