I used to do a post series on my travel blog of my many embarrassing moments. I couldn't help sharing this recent one since I usually have quite serious posts on here.
Well here's a good laugh for everyone at my expense. So I needed to drop off my 24 urine sample at the lab at the hospital. Unfortunately I couldn't get much pee in that 24 hours (I mean part of the problem because I can't drink a whole lot without pain). Anyway, I park, and the container is in a bag they gave me with handles so I use my cane to walk to the lab holding onto the bag. I get to the desk and look down to realize the bag is wet AND there's not only urine all over the outside of the container, but has saturated the lab note needed to send my info out for the doctor to get tested. Weirdly enough, the lid is still tightly secured, fortunately it wasn't a whole lot (not that I had much to begin with). Can you just imagine though as I realize this, I now need to explain it to the poor lab tech? She gets gloves, makes a comment about how little is in the tub (again I explain it's the reason why we are testing) and I give her the disgusting pee form. She tells me they are going to hang it up to dry so that she can make copies to mail off 😳😞 Sooo thats how my morning started...
Anyone else have a funny, embarrassing story they'd like to share?
You can first watch this video or read the Part 1 of this post if you'd like. I wouldn't have been able to be where I am without my people. It really takes a village. I used to be a little too proud to accept help, and maybe why God has had to change my heart because I'm no longer in a position to just decline.
I've had gifts and cards sent or dropped off to me that lifted my spirits in the most trying times.
I've had people bring food over or cook meals for us.
I've had people just check on me and not freak out when I don't respond or take forever to.
I've had family members watch girls or take them out to go do something.
I've had many family members come over and clean.
I've had people call doctors or about medicine so I didn't have to.
I've had people cry with me (phone definitely counts) when I needed it most and hugged me.
I've had so much encouragement on the blog and social media with comments and feedback and I really had no idea how much that would affect me and give me an extra push when I'm feeling discouraged.
I want to thank all of you who have encouraged me, prayed for me, wrote me, texted me, called me, and helped me and my family in so many different ways.
Hebrews 6:1010 God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them.
It has been a difficult past two weeks. Unfortunately I feel like every update post has been described that way of how things are going the last six months. I've learned it's ok to acknowledge the negative to see how far you've come and answered prayers, but it's important to find and focus on the positive as well even during the difficult. Also lists are kinda my thing ;)
Negative - Had some scary new symptoms on Monday.
Positive - My sister called my husband to come home. There's no way I would've gone to the ER if she didn't push me, plus I didn't even have the energy to get out of bed or ability to not be curled up in a ball position.
Negative - My health is so complicated not even my family or husband know the extent of everything I have and I did not have energy to talk at all, let alone explain with my pain.
Positive - Thankfully I had just written this post and C was able to print it off and bring with us.
Negative - No one at the ER knew what any of my diseases were.
Positive - It was an opportunity to spread awareness for their next patients that had it or might have it.
Negative - They weren't able to help me and sent me home.
Positive - Nothing was going to kill me right then and there so that was good to know.
Negative - Morphine didn't even make a dent in the pain.
Positive - At least that did show how bad my pain was and they did give me some pain medicine in the meantime that would last at least and kind of help before I could see my GP.
Negative - My GP wouldn't be able to see me for a couple days. I hadn't been able to eat or drink water because of instant pain so we didn't want to wait.
Positive - The NP was able to get me in that day and had experience with unknown health issues so she was sympathetic and ordered scans immediately (and even called me at home that night at 11 when she was at home).
Negative - Scans didn't show anything.
Positive - Scans didn't show anything, but still no answers to what's causing my pain and how to get relief.
Negative - Cardiologist and Interventional Radiologist in Dallas couldn't do anything to help and what the NP had recommended to do without any other ideas.
Positive - It did get (thanks to my sister-in-law who had to call multiple times while she was on vacation) my Venogram finally scheduled, since come to find out they never sent my referral for it.
Negative - Unfortunately, it's not until October 1st.
Positive - It's given more time to research and be prepared how I want to treat after my Venogram.
Negative - My pain was so bad that I scared my mom and she called her doctor in tears in a desperate plea to help me.
Positive - Her doctor actually knew about EDS and my compressions.
Negative - My mom's doctor had confirmed I had done all the right things, but there wasn't
anything else to really do at the moment besides the Venogram I have
scheduled with my Interventional Radiologist.
Positive - She would get me in for an appointment in a week and ended up getting me even quicker than we planned. She actually gave me
pain medicine until my Venogram. The first doctor in 6 months who
understood my pain and wasn't going to let me suffer.
Negative - Pharmacy was out of that prescription for a week and a half.
Positive - Took a few days, but doctor was finally able to write a different prescription to get it available for me.
Negative - I was in a really bad way and was bedridden. I even had to miss a special event that had been in the works for months.
Positive - My mother and father-in-law were in town for the event so they were able to help out with the girls.
Negative - I have been doing so bad that I haven't been able to really get out of bed, let alone drive anywhere.
Positive - I do finally have my handicapped tags now for when I can thanks to my mom.
Negative - Filling out paperwork for my geneticist and reread over my cardiologist's very extensive last report and noticed another compression diagnosed that I somehow missed. That now makes it the total of 5 compressions that I have (which is the most and all of them I think you can have?)
Positive - I have some great support groups with others fighting these illnesses as well, so I've been able to reach out for advice and realize I am not alone because others are going through this as well.
Negative - I had just got my medicine and finally felt like a human being and that night Willa got a bug, therefore, I got a bug all weekend.
Positive - My sweet girls gave me some pretty precious moments in that discouragement. L would come bring me my cane and help me walk back to my room. W would come pat me and say "Mommy, you will feel better soon, I will take care of you."
Negative - I still have a week left of waiting until my venogram.
Positive - My sister is going with me and my mom is watching the girls so my husband doesn't have to take off since he will need his days when we decide surgery. Negative - Right now things seem discouraging and overwhelming with all the things wrong and not knowing what is the best thing to do for surgery not to prevent more problems or pain.
Positive - I have been in this situation before and God has never left me or let me down. Look at all that has happened in the last six months in how He continues to constantly show up and give me sweet reminders I need.
I leave you (and remind myself) of a verse I prayed on and repeated over and over while I was on bed rest with my youngest daughter:
Isaiah 43:1-7 "But now, this is what the Lord says - he who created you, Jacob, he who formed you, Israel: “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush and Seba in your stead. Since you are precious and honored in my sight, and because I love you, I will give people in exchange for you, nations in exchange for your life. Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west. I will say to the north, ‘Give them up!’ and to the south,‘Do not hold them back.’ Bring my sons from afar and my daughters from of the ends of the earth— everyone who is called by my name, whom I created for my glory, whom I formed and made.”
I was going to make another post before this one about the past two weeks, but I felt like I really needed to write this and share.
I have a hard time being honest about my health to others because 1) I don't want to scare or worry those I love 2) Everything is so complicated and not very interesting to most people 3) I don't want people to question my faith or doubt my hope and positiveness and 4) I really really have waited this long to even tell a lot of people or seek help because I didn't want to come across that I'm weak, or I'm doing it for attention, or trying to play the victim.
Unfortunately when health gets so debilitating it consumes your whole being and life where you can't function or do anything you used to, it's kinda hard to continue to just grin and bear it or pretend anymore.
Plus, God really put it on my heart I needed to start sharing. It still makes me nervous every time I push post to put any of this, or me, out there, BUT it if helps just one person get diagnosed early and not to have to go through years and years of pain and terrible symptoms, doctors not knowing what's wrong, or making you doubt and feel like it's in your head, then I need to suck up my uncomfortableness and do it.
You know for so long I just wanted answers so that I could fix my issues and just move on with my life. Answers aren't always easy to take when you learn what you have is a rare chronic illness that is only going to get worse called Ehlers Danlos Syndrome. Then when you find out more, that what's causing your pain isn't the 1 thing you thought it now could be, pelvic congestion syndrome, but actually 5 compressions including pelvic congestion syndrome, I have to admit that was pretty overwhelming and discouraging. It's taken a lot of praying, reading the Bible, seeking out guidance and inspiration, and leaning on my loved ones. And if I'm really honest, it's my two little girls and husband who make me never think twice about giving up. Sometimes I just need a minute to cry and talk to God and figure out how I'm going to keep in this fight.
I had a realization though that if I don't share just how real, and scary, and dangerous, and hard all my health issues are, how is anyone going to see all the blessings and my testimony of what He has, and is doing?
With this honesty I wanted to share other people's stories of what they are going through with these illnesses and I'm so proud of them for taking the leap to spread awareness. Because even after diagnosis, no one knows anything about any of these vascular compressions. Scans are reported normal when the proof couldn't be more evident. Doctors or nurses don't believe when there really is an emergency and you want to be proactive and save your life, but how, when no one knows enough about MALS, or SMAS, or NCS, or MTS, or PCS. I wish those were only my health problems, but the fact is I have like 10 more (that I even know of and have been diagnosed with at the moment).
Without further adieu, here's the other stories similar to mine motivating me in my current journey of figuring it out. I will continue to add more here as I come across.
You can read my all my diagnoses so far here. I also updated my About page if you'd like to take a look at my journey and specific posts on the blog.
Just had my first appointment Friday with the interventional radiologist, I was fortunate he even took me as a patient because he's not taking many anymore, but did on my cardiologist's behalf
In the process of diagnosing May-Thurner and Pelvic Congestion Syndrome with a venogram and seeing the degree of the Nutcracker compression to decide what route of surgeries (cardiologist was able to diagnose the Nutcracker with an ultrasound he had done Thursday)
Waiting for the call to know when we will schedule the venogram and how long of a wait
Depending how compressed the renal vein is for the Nutracker, treatment would be a kidney autotransplant
If I am confirmed with May-Thurner, we may stent the iliac vein first to see if there is relief. Coils are usually put in to treat the Pelvic Congestion Syndrome, but if there are compressions and those aren't fixed first, it can cause more pain and problems. If the Nutcracker compression is not severe enough for the transplant, and we try a stent or coils with no relief or symptoms improving, then we will go ahead and do the transplant as well.
My IR was honest and the pain and recovery for an EDS patient even for the stent and coils can be very difficult. Realistically everyone is so different you can't know ahead of time if you will get relief and if the relief may only be on a scale 3 points of an improvement.
Once coils are put in, they usually cannot be removed. If for some reason they need to be because of a reaction to the metal or the coil has traveled, many doctors will not perform the operation and if so, it will be open surgery.
There are also risks of not having treatment or surgery done. Because of the compressions and blood pooling, not only the pain and not being able to function, but blood clots and organ damage can be caused from not enough blood flow.
Thankfully I have the best doctors in the state and country, and awesome Facebook support groups that have feedback on the doctors, surgeries, and risks, but a lot to think about and trying to just pray and trust God on the best decision we can make.
Right now I'm in a valley, but that's ok.
"In the valley, I will lift my eyes to the one who sees me there."
May was Ehlers Danlos Syndrome Awareness Month and when I had shared quite a bit of information on the blog about my health issues. September is Pain Awareness Month and I thought since I have gotten a lot of answers and diagnoses since then, I'd do a post on those now. Here's a breakdown of everything for those of you interested in the details and more explanation of what I have. It's also difficult when someone does ask me what I have or what's wrong, although I'm so thankful they do want to know, it's just quite complicated that I thought it might be easier to have it all written down in one place to share.
I have Ehlers Danlos Syndrome (EDS), a genetic connective tissue disorder that affects all the systems in your body. I was diagnosed with Hypermobile EDS by my rheumatologist and confirmed by my dermatologist, cardiologist, geneticist, and primary care practitioner with the Beighton ScoreTest, physical exam, genetic testing, and symptoms. As of right now, I have also been diagnosed with comorbidities of EDS that are Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Arthritis-Adrenaline Disorder (AAD), MTHFR Gene Mutation, Median arcuate ligament syndrome (MALS), Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), May Thurner Syndrome (MTS), Chronic Venous Insufficiency (CVI), Thoracic Outlet Syndrome (TOS), Carpal Tunnel Syndrome, Raynaud’s, Vestibulopathy, TMJ Dysfunction, CranioCervical Instability (CCI), Costochondritis, Ichthyosis Vulgaris, Keloid & Hypertrophic Scars, Non-Alcoholic Fatty Liver Disease, Abdominal Aorta Atherosclerosis, Hypoplastic Ribs at T12, Sacralization of L5, Small Right Inguinal Hernia, Sinus Arrhythmia, & a Heart Murmur.
I was diagnosed with POTS by my cardiologist with a tilt table test.
A condition that affects circulation (blood flow). It involves the autonomic nervous system (which automatically controls and regulates vital bodily functions) and sympathetic nervous system (which activates the fight or flight response). POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down.
Symptoms include:
High/low blood pressure
High/low heart rate; racing heart rate
Chest pain
Dizziness/lightheadedness especially in standing up, prolonged standing in one position, or long walks
Fainting or near-fainting
Exhaustion/fatigue
Abdominal pain and bloating, nausea
Temperature deregulation (hot or cold)
Nervous, jittery feeling
Forgetfulness and trouble focusing (brain fog)
Blurred vision
Headaches and body pain/aches (may feel flu-like); neck pain
Insomnia and frequent awakenings from sleep, chest pain and racing heart rate during sleep, excessive sweating
Shakiness/tremors especially with adrenaline surges
I was diagnosed with MCAS by my allergist because of symptoms and relief from treatment (bloodwork did not confirm because it can be difficult to get the bloodwork and 2x24 hour urine samples done while knowing when you are in a flare).
When the mast cells in your body release too much of the substances inside them at the wrong times. Mast cells are part of your immune system. They’re found in your bone marrow and around the blood vessels in your body. When you’re exposed to stress or danger, your mast cells respond by releasing substances called mediators. Mediators cause inflammation, which helps your body heal from an injury or infection. This same response happens during an allergic reaction. Your mast cells release mediators to remove the thing you’re allergic to. For example, if you’re allergic to pollen, your mast cells release a mediator called histamine, which makes you sneeze to get rid of the pollen. If you have MCAS, your mast cells release mediators too frequently and too often.
I was diagnosed as homozygous for the C677T variant in the MTHFR Gene by my maternal-fetal medicine specialist and primary care practitioner with genetic testing.
Methylenetetrahydrofolate reductase, or MTHFR, is an enzyme that breaks down the amino acid homocysteine. The MTHFR gene that codes for this enzyme has the potential to mutate, which can either interfere with the enzyme’s ability to function normally or completely inactivate it. Homocysteine is an amino acid that the body produces by breaking down dietary proteins. High levels of homocysteine can damage blood vessels and lead to blood clots. People who have high homocysteine levels tend to have low levels of vitamin B-12. Women who test positive for an MTHFR mutation may have an increased risk of preeclampsia, blood clots, recurrent miscarriages, or giving birth to a baby with congenital disabilities.
Symptoms of homocystinemia due to MTHFR mutations include:
Abnormal blood clotting
Developmental delays
Seizures
Microcephaly
Blood clots
Poor coordination
Numbness or tingling in the hands and feet (source)
I was diagnosed with MALS by my cardiologist with a color doppler ultrasound.
A condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area (celiac plexus).
Symptoms include: The first sign of MALS is pain in the upper abdomen after eating. The pain causes patients to avoid eating, which can lead to weight loss. Other associated symptoms may include:
Nausea
Diarrhea
Vomiting
Delayed gastric emptying (a delay in food moving from the stomach into the small intestine (source)
I was diagnosed with SMAS by my cardiologist with a color doppler ultrasound.
A digestive condition that occurs when the duodenum (the first part of the small intestine) is compressed between two arteries (the aorta and the superior mesenteric artery). This compression causes partial or complete blockage of the duodenum.[1] Symptoms vary based on severity, but can be severely debilitating. SMAS typically is due to loss of the mesenteric fat pad (fatty tissue that surrounds the superior mesenteric artery).
Symptoms include:
Abdominal pain
Feeling full quickly when eating
Bloating after meals
Burping (belching)
Nausea and vomiting of partially digested food or bile-like liquid
Small bowel obstruction
Weight loss
Mid-abdominal "crampy" pain that may be relieved by the prone or knee-chest position or by lying on the left side (source)
I was diagnosed with NCS by my cardiologist with a color doppler ultrasound and CT Angiogram.
A condition that occurs when the left renal vein (the vein that carries blood purified by the left kidney) becomes compressed.
Symptoms include:
Blood in the urine (hematuria) which can occasionally cause anemia requiring blood transfusions
Abdominal or flank pain that may radiate to the thigh and buttock. Pain may be worsened by sitting, standing, walking, or riding in a vehicle that shakes.
Chronic fatigue syndrome and fatigue symptoms
Pelvic congestion syndrome, causing symptoms such as chronic pelvic pain, pain during intercourse, painful or difficult urination, painful menstrual cramps during periods, and polycystic ovaries
Orthostatic proteinuria (elevated protein excretion while in the upright position)
Orthostatic intolerance (feeling light-headed or having palpitations when standing upright) (source)
I was diagnosed with MTS by my interventional radiologist and confirmed by my vascular surgeon with a venogram and a CT Angiogram.
Caused when the left iliac vein is compressed by the right iliac artery, which increases the risk of deep vein thrombosis (DVT) in the left extremity. DVT is a blood clot that may partially or completely block blood flow through the vein. (source)
With a DVT, symptoms include:
Changes in skin color, with it looking more red or purple than normal
I was diagnosed with CVI by my cardiologist and confirmed by my interventional radiologist with ultrasounds. Reflux of right common femoral, great saphenous, lesser saphenous, popliteal, & peroneal veins. Reflux of left common femoral, great saphenous, posterior tibial, & peroneal veins.
Valves in your veins (usually in the leg or sometimes the arms) don't work, causing blood to pool in your legs and putting increased pressure on the walls of the veins. May be due to valve dysfunction (usually hereditary) or due to valve destruction after a deep vein thrombosis (DVT) or blood clot.
I was diagnosed with TOS by my cardiologist with a color doppler ultrasound and ROOS Test.
Thoracic outlet syndrome refers to a group of conditions characterized by the compression of the nerves, arteries, and veins that pass through the space between the collarbone and the first rib. This space is known as the thoracic outlet. Anything that narrows the space inside the thoracic outlet can put pressure on the blood vessels and nerves. This can cause pain in the neck, shoulders, and arms.
Symptoms associated with venous thoracic outlet syndrome include:
I was diagnosed with Carpal Tunnel Syndrome by my neurologist with EMG Testing.
Carpal tunnel syndrome is a painful, progressive condition that occurs when the median nerve in the wrist is compressed. Also known as median nerve entrapment or median nerve compression, it may happen when a nerve swells, the tendons become inflamed, or something causes swelling in the carpal tunnel.
Symptoms include:
Pain
Numbness
Tingling
These symptoms occur in the thumb and the two fingers next to it, as well as half of the ring finger. They may extend to the rest of the hand and into the forearm.
As the condition progresses, symptoms may persist during the day. The person may lose grip strength and find it harder to form a fist or grasp small objects. Opening a bottle of soda, doing up buttons, or typing on a keyboard can become a challenge.
If left untreated, the muscles at the base of the thumb may wither away, and the person may no longer be able to tell hot from cold with the thumb and finger. (source)
I was self diagnosed with Raynaud’s by my symptoms.
A person with Raynaud’s disease experiences pain in the extremities, for example, the fingers, when temperatures drop.
Blood vessels narrow and almost completely shut down. Fingers or toes turn from white to blue and, then, as the blood returns, they flush red. (source)
I was diagnosed with Vestibulopathy by my cardiologist with VNG Testing.
A disorder characterized by dizziness, imbalance, nausea, and vision problems.
Pathological processes of the vestibular labyrinth which contains part of the balancing apparatus. Patients with vestibular diseases show instability and are at risk of frequent falls. (source)
I was diagnosed with Costochondral Separation by a physical trainer with a physical exam.
Each of your ribs is connected to your breastbone by a piece of cartilage. The point where your rib connects to this cartilage is known as your costochondral joint. Costochondral separation is an injury that occurs when one or more of your ribs separates from this cartilage. This type of injury is also called a separated rib.
I was diagnosed with Costochondritis by a physical trainer with a physical exam.
The ribs are connected to the breastbone by tough, protective tissue called cartilage. When this cartilage becomes inflamed, the condition is known as costochondritis or chest wall pain. While this condition is usually temporary, it can be alarming, as the pain can become so significant it mimics a heart attack.
Symptoms include:
Chest discomfort and pain may be stabbing, burning, or aching in nature. The ribs most affected are the second to fifth ones.
The following activities usually worsened the pain associated with costochondritis:
Significant amount of coughing
Strenuous exercise
Physical activity using the upper arms, such as lifting boxes (source)
I was diagnosed with TMJ Dysfunction by my primary care practitioner with a physical exam and symptoms.
The temporomandibular joint is located at the base of the skull. Commonly referred to as the TMJ, it allows for the movement required for chewing and talking. The joint connects the mandible, which is the lower jaw, and the temporal bone, which is on the side of the skull. Since the TMJ allows for movement both up and down as well as from side to side, it is one of the most complex joints in the body.
There is a range of symptoms linked to TMJ, including:
Pain
One of the most obvious symptoms of a TMJ disorder is pain that is felt when moving the jaw. However, other symptoms that may occur with a TMJ disorder include headaches or migraines, neck ache or backache, and earaches or pain around the ear that spreads to the cheeks.
If the pain is not located near to the jaw, a doctor will often look for other symptoms before diagnosing a TMJ disorder.
Sounds
A common but often painless symptom is an unusual popping, clicking, or even grinding noise that can occur while eating, talking, or simply opening the mouth.
Noises that occur when moving the jaw are not always a symptom of TMJ disorders. In fact, jaw noises are quite common. It is only when the sounds occur alongside pain or limited movement of the jaw that medical advice may be needed.
Buzzing, ringing, or numbness in the ears can occur alongside earaches, and these symptoms can also be associated with TMJ disorders.
Restricted movement
Limited movement that prevents the mouth from being opened fully or the jaw from being moved in certain directions can cause severe discomfort in everyday life. (source)
I was diagnosed with CCI by my geneticist with an evaluation and symptoms.
Craniocervical Instability, also known as the Syndrome of Occipitoatlantialaxial Hypermobility, is a structural instability of the craniocervical junction which may lead to a pathological deformation of the brainstem, upper spinal cord, and cerebellum. It primarily occurs in patients with Ehlers-Danlos Syndrome and other hereditary disorders of connective tissue. About 1 in 15 people with EDS will go on to develop CCI due to a lack of connective tissue support at the craniocervical junction. While some EDS patients present with this condition after a head and neck injury (such as whiplash), for the most part this condition tends to manifest gradually through repetitive stretch injuries from actions as simple as turning one’s head.
Symptoms include:
A heavy headache: a constant to near constant headache that can be described as feeling like the head is too heavy for the neck to support (feeling like a “bobble-head”)
A pressure headache: an impairment of CSF flow causes intracranial pressure which would be aggravated by “valsalva maneuvers” such as yawning, laughing, crying, coughing, sneezing or straining.
Dysautonomia: brainstem compression can lead to a dysfunctional autonomic nervous system (the involuntary regulator of all body functions). Symptoms of this include, but are not limited to:
Tachycardia (rapid heart)
Heat intolerance
Orthostatic intolerance (low blood pressure when standing)
I was diagnosed with Ichthyosis vulgaris by my dermatologist with a physical exam.
Ichthyosis vulgaris is a type of ichthyosis, a group of related skin conditions that interfere with the skin’s ability to shed dead skin cells, causing extremely dry, thick skin.
Symptoms include:
Ichthyosis vulgaris may present as skin dryness with accompanying fine, white, or skin-colored scales. Often, the skin will also flake.
The scaling associated with ichthyosis vulgaris can also cause the skin to crack in areas that are severely or persistently affected. Cracking most often occurs on the soles and palms.
Scaling can also lead to general discomfort and pain and make the skin more vulnerable to irritation and further drying. While rare, in some people with ichthyosis vulgaris, scaling interferes with the sweat glands causing either excessive sweating (hyperhidrosis) or an inability to sweat. (source)
I was diagnosed with Keloid & Hypertrophic Scars by my dermatologist with a physical exam.
Hypertrophic scars occur when there is a lot of tension around a healing wound. These scars are thick and raised, and often red in color. They may remain like this for several years. Hypertrophic scars are the result of an imbalance in collagen at the site of the wound. Keloids are reddish nodules that develop, as gristle-like connective tissue forms to heal a wound. A keloid continues to form even after the wound has healed, resulting in a large mound of scar tissue.
Symptoms include:
Both keloids and hypertrophic scars can be painful and itchy. They generally occur on the upper body, upper arms, shoulders, neck, or earlobes.
Characteristics of a hypertrophic scar include:
Restricting movement, as the skin is no longer as flexible
Forming within the boundaries of the original wound
Creating healing tissue that is thicker than usual
Being red and raised to start with but becoming flatter and paler over time (source)
I was diagnosed with Non-Alcoholic Fatty Liver Disease by my primary care practitioner with an MRI.
The liver typically contains some fat. However, if it builds up, it can cause fatty liver disease. This means that the liver is not able to function normally. Fatty liver disease can occur when there is more than 5% fat in the liver.
I was diagnosed with Abdominal Aorta Atherosclerosis by a CT Angiogram.
Atherosclerosis is a narrowing of the arteries caused by a buildup of plaque. It can result in a shortage of blood and oxygen in various tissues of your body. Pieces of plaque can also break off, causing a blood clot. If left untreated, atherosclerosis can lead to heart attack, stroke, or heart failure. (source)
Most symptoms of atherosclerosis don’t show up until a blockage occurs. Common symptoms include:
I was diagnosed with Sacralization of L5 by my physical therapist with a physical exam and confirmed by a pain specialist with an X Ray and CT Angiogram.
Sacralization is a common irregularity of the spine, where the fifth vertebra is fused to the sacrum bone at the bottom of the spine. The fifth lumbar vertebra, known as L5, may fuse fully or partially on either side of the sacrum, or on both sides. Sacralization is a congenital anomaly that occurs in the embryo.
Other symptoms associated with sacralization may include:
I was diagnosed with a Small Right Inguinal Hernia by a CT Angiogram.
An inguinal hernia occurs when part of the intestine or fatty tissue pokes through a weakened area of the abdominal wall to either side of the inguinal canal. The inguinal canal is a passage that occurs on each side of the lower abdomen and connects to the genitals. Symptoms of an inguinal hernia may not appear at first. One of the
first symptoms may be the feeling of heaviness or pressure on the groin.
Other symptoms may occur as the hernia grows larger. Some of the symptoms of an inguinal hernia may include:
Small bulge to one or both sides of the groin that may disappear on lying down
The scrotum may appear enlarged in males
Pressure or heaviness in the groin
Weakness in the groin
Pain, burning, or gurgling at the bulge site
Sharp pain or discomfort that increases when lifting, coughing, bending, or exercising
There
is a risk that part of the intestine may become trapped in the
abdominal wall, which can cause a loss of blood flow to this section of
the intestine. This condition is an incarcerated hernia and typically causes severe pain, fever, and an increased heart rate. If
the blood supply to the intestine does not resume quickly, the part of
the intestine that is protruding may die. Someone with an incarcerated
hernia requires immediate medical attention. (source)
________________________________________________________________
I was diagnosed with a Sinus Arrhythmia by my cardiologist with a heart monitor.
Sinus arrhythmia does not relate to the sinus cavities in the face but to the sinoatrial or sinus node in the heart. The sinoatrial or sinus node is located in the upper chamber on the right side of the heart, which is called the right atrium. The sinus node is known as the heart’s natural “pacemaker,” meaning it is responsible for the rhythm of a person’s heartbeats. Normal sinus rhythm is a regular rhythm found in healthy people.Sinus arrhythmia means there is an irregularity in the heart rhythm, originating at the sinus node. (source)
I was diagnosed with Heart Murmur by a general practitioner and confirmed by my cardiologist with a physical exam.
Heart murmurs result from vibrations, or turbulence, that blood causes when it flows through the heart. It produces sounds that doctors can hear through a stethoscope.When heart valves open and close, they make a “valve sound.” However, valves that do not open or close normally can cause blood to leak backward or prevent blood from flowing forward, which can create a sound called a murmur. Blood that moves very quickly through the heart can also create a type of murmur called a “flow murmur.” Symptoms include:
Currently waiting for diagnosis of Interstitial Cystitis (IC)
A chronic bladder problem. Your bladder holds pee after your kidneys have filtered it but before you pee it out. Symptoms can come and go. Or they may be constant. Interstitial cystitis causes urgent, often painful bathroom trips. You may have to pee as many as 40-60 times a day in severe cases. It can even keep you up at night. The bladder pain people feel with IC can range from a dull ache to piercing pain. Peeing may feel like just a little sting, or it can feel like serious burning. Symptoms include:
Bladder pressure and pain that gets worse as your bladder fills up.
Pain in your lower tummy, lower back, pelvis, or urethra (the tube that carries pee from your bladder out of your body)
For women, pain in the vulva, vagina, or the area behind the vagina
The need to pee often (more than the normal 7-8 times daily)
The feeling you need to pee right now, even right after you go
"I keep fighting voices in my mind that say I'm not enough Every single lie that tells me I will never measure up Am I more than just the sum of every high and every low Remind me once again just who I am because I need to know"
This post is a reminder for me, but maybe someone else needs to hear it. The last couple weeks have really been difficult on my heart. I read this article that explained how a chronic illness can affect your self esteem, and I don't think I realized just how much it has affected mine. Not only is my life a lot different than I had envisioned, but being active used to be my whole life. I thought it was my purpose and the gift God wanted me to share and inspire people with. I wasn't just an athlete all my life, but it was my passion and my dreams I had. The dreams of doing certain things with my children if I had them, and if I was able to live to old age, to continue being active and healthy to show people that they could and how beneficial it is.
The last couple years I have learned a new gift God has given me, perspective. So many experiences I have gone through have changed my perspective. I mean isn't that exactly why we go through experiences? I have learned we may not know or understand why we go through something especially how much it can change us, or the reasons for it until much later or even ever, but God does give me perspective during, to look at the positive, and what I am taking away from it right this minute. It's funny because I always looked at my overanalyzing as a very negative thing, but in reality, it has guided me through loss of a job, death, moving, traveling, infertility, and now chronic pain.
My overanalyzing lately has shown me I am enough. I am enough even if I can't play with my girls. I am enough even if I can't go out and have playdates by myself anymore. I am enough even if I can't keep up with cleaning or cooking. I am enough even if I have trouble carrying on a conversation. I am enough even if I'm not the strong independent wife I used to be. I am enough even if I can't be the one reaching out to family or friends or going to see them or doing things for them anymore. I am enough even if I have to get a disability tag and a wheelchair.
Thank you God for showing me I am enough. You have always known I am enough and you are showing me the people who love me also know that I am enough.
"You say I am loved when I can't feel a thing You say I am strong when I think I am weak And you say I am held when I am falling short And when I don't belong, oh You say I am Yours And I believe Oh I believe What You say of me I believe" - Lauren Daigle
This is a picture from high school that makes me cringe now looking back at how hyperextended my shoulders and elbows are. It took over 20 years and 20 doctors for me to get diagnosed. This article and this article both explain why it is so important to get diagnosed. They also explain why it's so important for me and others to spread awareness, especially if my girls end up having Ehlers-Danlos Syndrome as well. I am an educated woman athlete with a college background and career in health and exercise. I know how to research, seek out doctors, and don't think twice about getting second opinions. I can't imagine if 20 years and 20 doctors is my experience, what is someone else's might be who doesn't have those advantages? Unfortunately the journey doesn't end after diagnosis. Even after I finally got answers, I still had doctors not know or understand EDS, not believe me, think my pain was just in my head, and completely dismiss my documentation from other doctors.
"Sometimes you won't understand why you had to go through certain experiences until the very moment when the exact thing you went through is what allows you to help someone else."
It is now not only my goal to spread awareness, but also to take part in any research, questionnaires, or studies so it can help further knowledge and treatment about EDS. If you also have EDS, I encourage you to sign up for the EDS/HDS Global Registry and keep an eye out on ways you can get involved including clinical trials.
It's been quiet over in this space for awhile now because not only have I had a lot of medical things to check off my list, but I've been taking time to really let all the answers and diagnoses process in my mind. I wasn't really expecting the POTS, MALS, or CVI to change a whole lot about my situation, but it really has. I now understand the magnitude of the effects of my symptoms and how debilitating they have become. It's hard because with all my health issues I don't want to come across that I'm letting the illnesses win, but in fact if I don't accept these illnesses and their impact, I can't make the adaptations to improve what I can and make the most out of my health.
To be honest I have been really fighting the reality. Wanting to believe maybe that I don't have EDS or POTS and that I can somehow snap my fingers and jump out of this. Or pretend I'm fine and no one will know or realize how different things have become. That wasn't doing me any good at all though. Trying to do the things I used to was actually making me worse. So I needed a minute to grieve the person I thought I would be, but also look for the things I can still be despite my health obstacles.
Plus, when I am hurting so bad it's difficult to find the energy to write even though it can be very therapeutic and help me organize all my thoughts and feelings. I just want to make sure that even in the waiting periods or valleys, I still document what I'm going through. For others not to feel so alone or spread awareness so that they don't have to experience what I've had to go through.
It took this girl two years to figure out lessons that matched up a lot of what I've been learning and accepting. I also give glory to God because there's no way I would be able to turn the hardships into blessings.
