It is long and complicated, but I have tried to shorten it up. Seven years ago my husband suffered from acute appendicitis which caused him to go into severe septic shock and that's where it all began...
From there, he developed damage to his brain and central nervous system because of the severity of the illness in the hospital. It is from this point things gradually spiraled out of control.
After this surgery and my husband's return home, he was never the same. He suddenly was completely debilitated. He could not dress himself, button a shirt, grip a glass, scratch his nose, lift himself from a chair or step up one stair. He had completely been taken over by inflammation. And he had developed PTSD from the hospital stay which is common in 70% of patients with this experience. Afterwards, we revisited the ER and saw many doctors, and unfortunately due to a misdiagnosis, incorrect medications were prescribed and my husband was never properly treated for the condition he actually had. Because of not being properly treated, he progressively got worse.
Fast forward seven years...
My husband has been diagnosed and has symptoms of 23 different conditions. While it may sound as crazy to you as it does me, I have over 1000 pages of medical records and documents to back up my story.
#1- CSS which stands for Central Sensitization Syndrome.
All of the messages traveling from the nerves to the brain stem and brain are incorrect. Essentially it is dysfunction of the autonomic system. The individual with CSS is sensitive to things that are processed by the central nervous system affecting all senses: sight, sound, smell, taste, touch which can include bright lights, loud noises, strong smells, rough textures, and pressure on the body. It may also (which in my husband's case it does) involve certain foods or chemicals. Especially in Fibromyalgia Syndrome, the body is sensitized to anything unpleasant, i.e., cold, heat, a tickle or an itch.
Everything is amplified and heightened. He also cannot regulate his body temperature.
Central sensitization is also associated with cognitive deficits, such as poor concentration and poor short-term memory. Central sensitization also corresponds with increased levels of emotional distress, particularly anxiety. After all, the nervous system is responsible for not only sensations, like pain, but also emotions. When the nervous system is stuck in a persistent state of reactivity, patients are going to be literally nervous – in other words, anxious. Lastly, central sensitization is also associated with sick role behaviors, such as resting and malaise, and pain behavior.
This all makes my husband's PTSD worse, so that's problem #2. He has a severe case of PTSD originally caused by the surgery and exasperated by the heightened senses and anxiety from the CSS. Everything is heightened so nothing appears the way it truly is visually and sounds are much louder. So, this results in his being startled continuously throughout the day and panic attacks along with visual allusions.
#3- POTS- Postural Orthostatic Tachycardia Syndrome
POTS is a form of dysautonomia that affects the flow of blood through the body, thereby causing dizziness when standing. The blood cannot flow to the brain and instead pools in the legs.
In POTS, there is increase in heart rate and light-headedness, dizziness, nausea, and fainting upon standing, as well as exercise intolerance, fatigue, and a multitude of other symptoms. POTS may be so severe that even normal everyday activities usually taken for granted such as bathing or walking may be severely limited.
Other symptoms include:
Chronic Pain (General)
Shortness of Breath
His condition has progressed so severely that it has interfered with his daily activities, and he is wheelchair bound, and he can no longer care for himself with basic tasks such as meal preparation, dressing, bathing, hygiene, etc.
CSS is an umbrella condition... so with this comes Fibromyalgia, Chronic Fatigue Syndrome, chronic pelvic pain, idiopathic low back pain, interstitial cystitis (painful bladder), irritable bowel syndrome, multiple chemical sensitivity, myofascial and orofacial pain syndrome, restless legs syndrome, temporomandibular joint disorder (TMJ), Chronic Tension Headaches, Irritable Larynx Syndrome, Chronic Lyme-Like Syndromes, POTS - Postural Orthostatic Tachycardia Syndrome, non-cardiac chest pain, Post Traumatic Stress Disorder.
Unfortunately, my husband has symptoms of all the above. Doctors say this is an incurable disease that does not get better on it's own, but simply gets worse untreated. Well, our doctors didn't know what was wrong with my husband, and he went untreated for six years. He was diagnosed in June of 2018. I have watched my husband deteriorate gradually over the past few years, and then very rapidly in the past two years. It is heart breaking. While the disease is incurable. Improvement can be made through a comprehensive continuum of care, from acute inpatient rehabilitation, subacute extended recovery, to outpatient rehabilitation, which restores real-life skills to those with brain injuries, enabling a return to a more healthy and satisfying lifestyle with families.
Psychiatric disorders are common in CSS as well. Research suggests that is because they all involve dysregulation of the same neurotransmitters, with the dysregulation in CSS in different regions of the brain just as in psychiatric disorders.
Psychiatric conditions that commonly overlap with CSS include:
post-traumatic stress disorder
generalized anxiety disorder
panic attack disorder
My husband has developed these too...
And seizures... which he has upwards of 10 times per day...
And he has lesions on the white matter of his brain...
And excessive white matter for his age...
And after the surgery, he developed hypertension (high blood pressure)...
And he's now pre-diabetic due to the prednisone..,
And his cardiologist has recently discovered potential blockage in the arteries around his heart...
And he was misdiagnosed 7 years ago and placed on prednisone. So he is steroid dependent, and has Addison's Disease, in other words adrenal failure due to long term steroid use. There are many side effects from this medication as well as damage that had been done to his body because of this medication.
And one of his doctors believes he needs this rehabilitation facility very soon or his survival is in jeopardy. Recently it has been discovered that the septic shock my husband endured actually caused brain dysfunction as well as the damage to the central nervous system which affects all of the bodies daily processes and functioning.
Lastly, my husband has cognitive impairments which could also be due to the seizure disorder, the excessive white matter increase or lesions on the white matter or an unknown etiology. However, what we do know is that in 11 different areas he tested in the 1 percentile, such as short term memory, multitasking, reasoning, and problem solving. That means that 99% of other males in his age and education range scored higher! He used to not be like this, of course. In fact, my husband is incredibly intelligent. He is one of the most intelligent people I have ever met. He thinks at an incredibly fast rate, processes information rapidly, and learns quickly, and remembers 98% of what he learns. He is a store house of information across numerous subjects! Well, at least, this was the old version of him. The new, current version of him can get lost in the living room, walks around in circles confused, forgets the day of the week, forgets if he took his medication, and the name of his medication and dosage. Where is used to be overwhelmingly amazing at multitasking, now he cannot even multitask to the point that pouring a cup of coffee is overwhelming. Getting the cup, pouring the sugar, cream, and coffee into the cup is simply too much to process.
You might be asking, is that all?? Well, we hope and pray so. We are quite overwhelmed as it is, and we don't know if we can handle much more...
I am quite sure by now that you are probably just as overwhelmed by reading all of this as we are in dealing with it every day.
Which leads me to my request...
I don't want people to feel sorry for us.
I just want to get help for my husband.
Anyone who has met my husband, will agree with me that he is the most loving, kind, generous, humorous, fun-loving, great-souled man one could possibly meet.
He is good in the highest degree, great in every virtue.
You never see him behaving in a cowardly manner or wronging another person, because he is a man of honor and loves God above all, and he has no motive to do such things.
He asks for nothing, but gives readily.
He’s a straight-talker.
He doesn’t gossip or bad-talk others.
And he genuinely loves people. He cares about helping his fellow man and neighbor.
I can't say enough about this man that I have had the pleasure and opportunity to be married to. He is the love of my life, and I am fighting for his life. Please, join my fight. I can't bear to see him this way any longer when I know there is help for his condition.
He has been suffering for 7 long years. Now we have more answers than we could ever imagine receiving. He's been examined by doctors over 105 times, and had so many tests and blood work conducted. Numerous MRI's, CAT scans, PET scans, EEG's, lumbar puncture, and more.
Here is what I am raising money for:
There are no cures, but there are treatment options that can help him. We have been denied treatment at a number of facilities due to my husband having "too many illnesses". His case is very complicated.
He needs an acute inpatient rehabilitation, sub-acute extended recovery, followed by an outpatient rehabilitation. Patients participating in an intensive rehabilitation program can get 50-60% better and leave with the capabilities of caring for themselves and continue self-care and maintenance of these conditions...
The latest update regarding my husband is that we did indeed raise some money and traveled to the Mayo Clinic to participate in a program for three weeks. My husband was the worst patient there. The doctors did their initial evaluations and then met with us to discuss whether or not the program was the best fit for him as it is not hands on with each patient like a rehabilitation hospital would be. It was not the right fit for him, and he has only worsened since leaving there. He no longer has the strength to stand up, and he has more cognitive problems as well as an increase in seizure activity and tonic clonic seizures including gran mal.
Up until now, I have worked two and three jobs to support us over the past 7 years as my husband has not been capable of working. He does not receive any disability, but we have applied, and have been denied, so we have begun the appeals process. I am informed that he does not qualify for long term disability and back pay because even though it is proven and documented that he has been ill since 2012, my husband has no work credits since that date.
We need your prayers as well as financial assistance. I am looking for a new place to stay for the two of us to eventually move into, and we need him to go into the appropriate medical hospital in the meantime. The list of needs goes on and on...
Neither of us know how much longer we can continue this. We are both getting burnt out. He is overwhelmed with the non-ceasing pain and discomfort. He has pain the moment he wakes up from the top of his head down to his feet. The stress and pain has caused him to develop PNES seizures which as he deteriorates have now progressed to convulsive seizures and possible epileptic seizures. I am overwhelmed with the responsibilities, and have developed my own health problems while being his caregiver.
Please help us any way you can in our endeavors to get him all the help he needs so that we can improve his quality of life.
Anything will help. Please spread the word, and ask people you know to help as well. We are truly grateful for all that has been done thus far. We are definitely people of faith, and we know that through all of this, we must stay strong and hopeful. We plan on using our knowledge of what we've learned to help others in the future, and to pay it forward for others who are in need.
Thank you so much for simply hearing our story...
You can always email me if necessary at [email redacted].
Want to imagine what Fibromyalgia is like??
First, catch the flu. Then get a bad sunburn all over your body. Next, put on tight fitting clothes and take a tumble down a flight of stairs. Stay awake for 36 hours straight. Randomly stick your fingers and toes into light sockets. Consume beans and prunes and suffer the consequences. Bang head against the wall ten times. Put jaw in a vise and pull hard. Sit in a car and have someone crash into the back of it. Tie cinder blocks to your ankles, and throw on several heavy wet wool blankets and walk around. Turn on both a heater and fan to high and alternately stand in front of one then the other. Spin around fast and then stop. Then wake up tomorrow and experience this all over again. Then the next day, and the next, and the next for years. How would you feel, think, and perceive life after living with this?
Enjoy your symptoms. Enjoy your life.
My husband's daily symptoms list....
GENERAL __ Fatigue, made worse by physical exertion or stress __ Activity level decreased to less than 50% of pre-illness activity level __ Recurrent flu-like illness __ Sore throat __ Hoarseness __ Tender or swollen lymph nodes (glands), especially in neck and underarms __ Shortness of breath (air hunger) with little or no exertion __ Frequent sighing __ Tremor or trembling __ Severe nasal allergies (new allergies or worsening of previous allergies) __ Cough __ Night sweats __ Low-grade fevers __ Feeling cold often __ Feeling hot often __ Cold extremities (hands and feet) __ Low body temperature (below 97.6) __ Low blood pressure (below 110/70) __ Heart palpitations __ Dryness of eyes and/or mouth __ Increased thirst __ Symptoms worsened by temperature changes __ Symptoms worsened by air travel __ Symptoms worsened by stress __ Symptoms worsened by barometric changes
PAIN __ Headache __ Tender points or trigger points __ Muscle pain __ Muscle twitching __ Muscle weakness __ Paralysis or severe weakness of an arm or leg __ Joint pain __ TMJ syndrome __ Chest pain
GENERAL NEUROLOGICAL __ Lightheadedness; feeling "spaced out" __ Inability to think clearly ("brain fog") __ Seizures __ Seizure-like episodes __ Syncope (fainting) or blackouts __ Sensation that you might faint __ Vertigo or dizziness __ Numbness or tingling sensations __ Tinnitus (ringing in one or both ears) __ Photophobia (sensitivity to light) __ Noise intolerance
EQUILIBRIUM / PERCEPTION __ Feeling spatially disoriented __ Dysequilibrium (balance difficulty) __ Staggering gait (clumsy walking; bumping into things) __ Dropping things frequently __ Difficulty judging distances (e.g. when driving; placing objects on surfaces) __ "Not quite seeing" what you are looking at
SLEEP __ Hypersomnia (excessive sleeping) __ Sleep disturbance: unrefreshing or non-restorative sleep __ Sleep disturbance: difficulty falling asleep __ Sleep disturbance: difficulty staying asleep (frequent awakenings) __ Sleep disturbance: vivid or disturbing dreams or nightmares __ Altered sleep/wake schedule (alertness/energy best late at night)
MOOD / EMOTIONS __ Depressed mood __ Suicidal thoughts __ Suicide attempts __ Feeling worthless __ Frequent crying __ Feeling helpless and/or hopeless __ Inability to enjoy previously enjoyed activities __ Increased appetite __ Decreased appetite __ Anxiety or fear when there is no obvious cause __ Panic attacks __ Irritability; overreaction __ Rage attacks: anger outbursts with little or no cause __ Abrupt, unpredictable mood swings __ Phobias (irrational fears) __ Personality changes
EYES AND VISION __ Eye pain __ Changes in visual acuity (frequent changes in ability to see well) __ Difficulty with accommodation (switching focus from one thing to another) __ Blind spots in vision
SENSITIVITIES __ Sensitivities to medications (unable to tolerate "normal" dosage) __ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays) __ Sensitivities to foods __ Alcohol intolerance __ Alteration of taste, smell, and/or hearing
UROGENITAL __ Frequent urination __ Painful urination or bladder pain __ Prostate pain __ Impotence __ Endometriosis __ Worsening of premenstrual syndrome (PMS) __ Decreased libido (sex drive)
GASTROINTESTINAL __ Stomach ache; abdominal cramps __ Nausea __ Vomiting __ Esophageal reflux (heartburn) __ Frequent diarrhea __ Frequent constipation __ Bloating; intestinal gas __ Decreased appetite __ Increased appetite __ Food cravings __ Weight gain __ Weight loss
SKIN __ Rashes or sores __ Eczema or psoriasis
OTHER __ Hair loss __ Mitral valve prolapse __ Cancer __ Dental problems __ Periodontal (gum) disease __ Aphthous ulcers (canker sores)
COGNITIVE __ Difficulty with simple calculations (e.g., balancing checkbook) __ Word-finding difficulty __ Using the wrong word __ Difficulty expressing ideas in words __ Difficulty moving your mouth to speak __ Slowed speech __ Stuttering; stammering __ Impaired ability to concentrate __ Easily distracted during a task __ Difficulty paying attention __ Difficulty following a conversation when background noise is present __ Losing your train of thought in the middle of a sentence __ Difficulty putting tasks or things in proper sequence __ Losing track in the middle of a task (remembering what to do next) __ Difficulty with short-term memory __ Difficulty with long-term memory __ Forgetting how to do routine things __ Difficulty understanding what you read __ Switching left and right __ Transposition (reversal) of numbers, words and/or letters when you speak __ Transposition (reversal) of numbers, words and/or letters when you write __ Difficulty remembering names of objects __ Difficulty remembering names of people __ Difficulty recognizing faces __ Difficulty following simple written instructions __ Difficulty following complicated written instructions __ Difficulty following simple oral (spoken) instructions __ Difficulty following complicated oral (spoken) instructions __ Poor judgment __ Difficulty making decisions __ Difficulty integrating information (putting ideas together to form a complete picture or concept) __ Difficulty following directions while driving __ Becoming lost in familiar locations when driving __ Feeling too disoriented to drive
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