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Showing posts with label tired. Show all posts
Showing posts with label tired. Show all posts

Tuesday, January 8, 2019

Gastroparesis Medical Studies Update; Join and/or Keep Up With Clinical Trials







Source: Unknown


Source: Unknown


Source: On The Image but one of my favorites on how to explain Gastroparesis.









Clinical Trials - We Need Better Treatments

I apologize for taking so long to write an article. I, myself, have had a rough year like everyone else seemed to in the GP Community. I lost A LOT of friends last year in my support groups, people I started support groups with, and people I talked to regularly. I logged into Facebook this morning to check on my groups, as I've been sick with pneumonia on top of Gastroparesis for the past week and a half (before that, my husband and I were passing a respiratory virus back and forth) and found another one of my friends had died. She was someone I've known since I first started advocating for Gastroparesis. She was apart of the handful of women who helped start Gastroparesis support groups and build up the Gastroparesis Community. I wanted to dedicated this article to her, and the other friends I've lost. Last year, we lost 48 people. This year, so far, I think the total is four or five people. It's heartbreaking. We need better treatments. Having invasive "treatments" like feeding tubes, which can cause infections and worse, and then on the other end of the spectrum, medicine like Reglan, which can lead to irreversible, neurological disorders. We need medication to help our stomachs, to keep them from cramping so badly, to help them contract.

We need SOME kind of help. I'm so upset at watching my friends suffer and die. I get scared every time I throw up, wondering if it's going to be the last time - if this is the time I'm going to rupture my esophagus and die. I get panic attacks logging on to Facebook, scared I might read another one of my friends has passed away, which always upsets me right away, not only because they passed, but I feel like when I take breaks from Facebook, that I'm letting them down for not being online. I feel like I didn't get to say what I wanted to say to them before they passed. Most of that is on me. I've been not terrified to log into Facebook, but just



If you are interested in joining a clinical trial for Gastroparesis, The National Institute of Diabetes, Digestive, and Kidney Diseases are having people sign up for one now: https://www.niddk.nih.gov/health-information/digestive-diseases/gastroparesis/clinical-trials


Centerwatch has a long list of clinical trials that need volunteers as well: https://www.centerwatch.com/clinical-trials/listings/condition/72/gastroparesis/


ClinicalTrials.gov has a current trial happening as we speak: https://clinicaltrials.gov/ct2/show/NCT03500354

The Trial Says,
"Brief Summary:

Gastroparesis is a chronic, morbid and costly neuromuscular disorder of the stomach characterized by delayed gastric emptying in the absence of gross structural abnormalities. The periprandial symptoms associated with this disease can preclude adequate oral intake and often lead to weight loss and nutritional deficiencies 1. These manifestations are largely due to impaired gastric accommodation of meals and delayed transfer of food boluses from the stomach into the duodenum2. Consequently, the investigators hypothesize that dietary supplementation with a low volume, hypercaloric nutritional drink can help prevent malnutrition, decrease symptom burden and improve health-related quality of life in this population. Due to the paucity of such a supplement, the investigators developed a novel nutritional drink designed to maximize tolerability in patients with gastroparesis . This nutritional drink was tested on healthy volunteers (phase I) and passed the palatability test. The investigators now aim to test the tolerability of this drink on gastroparesis patients.

Condition or disease Intervention/treatment Phase
Gastroparesis Dietary Supplement: Nutrient drink Not Applicable

Detailed Description:

Primary objective:

To evaluate the safety and tolerability of the nutritional drink in gastroparesis patients.

Secondary objective:

To evaluate the efficacy of the nutritional drink in gastroparesis patients.

Study Procedures This study will be a pilot, open-label, trial in gastroparesis patients. A total of 20 patients will be recruited from the gastroenterology gastroparesis clinic. If the volunteer meets eligibility criteria, a co-investigator will contact the patient to schedule a study visit with a nutritionist and obtain a written consent. The contact and screening information of patients that are successfully recruited will be documented, placed in the participant's study folder and stored in a locked cabinet in the research unit. Any information documented during the screening process for patients who do not meet basic eligibility criteria or do not wish to participate will be immediately destroyed.

Patients will be given enough supply of the nutrition drink for (4 weeks) and asked to consume 200 ml of the drink three times daily. A follow-up call will be scheduled on day 2, day 7 and at the end of the study to make sure patients are tolerating the drink. Participants will be allowed to consume water and food as desired during the study period but will need to maintain an accurate food diary for at least one week prior to enrollment and during the study (at 2 weeks and at 4 weeks) along with weight measurements at baseline, 2 weeks, 4 weeks and 6 weeks. The participants will be asked to complete a palatability questionnaire. They will also complete the Gastroparesis Cardinal Symptom Index (GCSI) daily diary and the PROMISE scale prior to enrollment as a baseline for their symptoms and again at 2 weeks, 4 weeks (end of the study) and 6 weeks. Changes in these scales from baseline will determine the efficacy and possibly side effects of the nutritional drink.

Study duration and number of study visits required of research participants:

4 weeks, initial study visit with a nutritionist for screening and consenting followed by 3 follow-up phone calls on day 2, day 7 and at 4 weeks (the end of the study) and a final study visit at 6 weeks (2 weeks after finishing the study)


Study Type : Interventional (Clinical Trial)
Estimated Enrollment : 20 participants
Intervention Model: Single Group Assignment
Intervention Model Description: Pilot feasibility open-label study
Masking: None (Open Label)
Primary Purpose: Treatment
Official Title: Nutritional Drink in Gastroparesis
Estimated Study Start Date : February 1, 2019
Estimated Primary Completion Date : May 2019
Estimated Study Completion Date : August 2019




Primary Outcome Measures:

Tolerability will be measured by the Palatability Questionnaire at 2 days [ Time Frame: 2 days post-intervention ]

Patients will be given enough supply of the nutrition drink for 4 weeks and asked to consume 200 ml of the drink three times daily. A follow-up call will be scheduled on day 2 of the study to make sure patients are tolerating the drink.

Tolerability will be measured by the Palatability Questionnaire which rates six items on a scale of 1 to 5 (1= strongly disagree and 5= strongly agree. The six items are:
The formula/supplement tasted very good.
The formula/supplement tasted very bad.
I had no problems drinking the supplement.
Drinking the supplement made me feel ill.
I could drink more of this supplement anytime
I would never drink more of this supplement again

Tolerability will be measured by the Palatability Questionnaire at 7 days [ Time Frame: 7 days post-intervention ]

Patients will be given enough supply of the nutrition drink for 4 weeks and asked to consume 200 ml of the drink three times daily. A follow-up call will be scheduled on day 7 of the study to make sure patients are tolerating the drink.

Tolerability will be measured by the Palatability Questionnaire which rates six items on a scale of 1 to 5 (1= strongly disagree and 5= strongly agree. The six items are:
The formula/supplement tasted very good.
The formula/supplement tasted very bad.
I had no problems drinking the supplement.
Drinking the supplement made me feel ill.
I could drink more of this supplement anytime
I would never drink more of this supplement again

Tolerability will be measured by the Palatability Questionnaire at 4 weeks [ Time Frame: 4 weeks post-intervention ]

Patients will be given enough supply of the nutrition drink for 4 weeks and asked to consume 200 ml of the drink three times daily. A follow-up call will be scheduled at 4 weeks to make sure patients are tolerating the drink.

Tolerability will be measured by the Palatability Questionnaire which rates six items on a scale of 1 to 5 (1= strongly disagree and 5= strongly agree. The six items are:
The formula/supplement tasted very good.
The formula/supplement tasted very bad.
I had no problems drinking the supplement.
Drinking the supplement made me feel ill.
I could drink more of this supplement anytime
I would never drink more of this supplement again

Safety will be measured by the NIH PROMISE scale at baseline [ Time Frame: Baseline ]

This will be measured by the NIH PROMISE scale. This is a 10 point scale (0=none and 10= most severe) that rates the following symptoms:
Pain, especially in the abdomen, chest or back
Abdominal distension (bloating, sensation of excess gas)
Difficulty eating, sensation of food being stuck in the stomach.
Difficulty with bowel movements (constipation or straining)
Nausea and/or vomiting
Thirst
Weakness, lack of energy, fatigue, difficulty moving.

Safety will be measured by the NIH PROMISE scale at 2 weeks [ Time Frame: 2 weeks post-intervention ]

This will be measured by the NIH PROMISE scale. This is a 10 point scale (0=none and 10= most severe) that rates the following symptoms:
Pain, especially in the abdomen, chest or back
Abdominal distension (bloating, sensation of excess gas)
Difficulty eating, sensation of food being stuck in the stomach.
Difficulty with bowel movements (constipation or straining)
Nausea and/or vomiting
Thirst
Weakness, lack of energy, fatigue, difficulty moving.

Safety will be measured by the NIH PROMISE scale at 4 weeks [ Time Frame: 4 weeks post-intervention ]

This will be measured by the NIH PROMISE scale. This is a 10 point scale (0=none and 10= most severe) that rates the following symptoms:
Pain, especially in the abdomen, chest or back
Abdominal distension (bloating, sensation of excess gas)
Difficulty eating, sensation of food being stuck in the stomach.
Difficulty with bowel movements (constipation or straining)
Nausea and/or vomiting
Thirst
Weakness, lack of energy, fatigue, difficulty moving.

Safety will be measured by the NIH PROMISE scale at 6 weeks [ Time Frame: 6 weeks post-intervention ]

This will be measured by the NIH PROMISE scale. This is a 10 point scale (0=none and 10= most severe) that rates the following symptoms:
Pain, especially in the abdomen, chest or back
Abdominal distension (bloating, sensation of excess gas)
Difficulty eating, sensation of food being stuck in the stomach.
Difficulty with bowel movements (constipation or straining)
Nausea and/or vomiting
Thirst
Weakness, lack of energy, fatigue, difficulty moving.





How Gastroparesis Acts in The Body. Source:https://www.pinterest.com/pin/278026976974184742/?lp=true









Secondary Outcome Measures:

Improvement in gastroparesis symptoms [ Time Frame: Baseline, 2, 4 and 6 weeks ]
Change in weight compared to baseline

Improvement in gastroparesis symptoms [ Time Frame: Baseline, 2, 4 and 6 weeks ]

Changes in the Gastroparesis Cardinal Symptom Index (GCSI) daily diary as compared to baseline. This is a six point severity scale (0-5 with 0= none and 5 = very severe) that rates the following symptoms
Nausea
Early satiety
Postprandial fullness
Bloating
Upper abdominal pain
Retching
Vomiting
Stomach fullness
Loss of appetite
Stomach or belly visibly large



Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

Ages Eligible for Study: 16 Years and older (Child, Adult, Older Adult)
Sexes Eligible for Study: All
Gender Based Eligibility: Yes
Gender Eligibility Description: Female or male
Accepts Healthy Volunteers: No
Criteria

Inclusion Criteria:

Patients with gastroparesis confirmed with symptoms and a gastric emptying study.
Inability to maintain adequate caloric intake by standard dietary measures for gastroparesis due to gastrointestinal symptoms

Exclusion Criteria:

Recent diagnosis of disorder other than gastroparesis that could affect food intake
Oropharyngeal dysphagia or other condition with risk for aspiration from oral ingestion.
Allergic reactions to any of the ingredients of the nutritional drink
Current pregnancy. Pregnancy status will be determined by questioning the potential subject.
Patient with gastrostomy/jejunostomy tube feeds or on total parenteral nutrition
Currently taking any anti-coagulant


Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03500354

Contacts

Contact: Pankaj J Pasricha, MD 4105027173 ppasric1@jhmi.edu
Contact: Carmen Roberts 4105027173 ccroberts@jhmi.edu

Locations

United States, Maryland
Johns Hopkins University Active, not recruiting
Baltimore, Maryland, United States, 21287
Sponsors and Collaborators
Johns Hopkins University
Investigators

Principal Investigator: Pankaj J Pasricha, MD Johns Hopkins University
More Information
Go to


Responsible Party: Johns Hopkins University
ClinicalTrials.gov Identifier: NCT03500354 History of Changes
Other Study ID Numbers: IRB00157677
First Posted: April 17, 2018 Key Record Dates
Last Update Posted: December 19, 2018
Last Verified: December 2018
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No


Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No

Keywords provided by Johns Hopkins University:

malnutrition


Additional relevant MeSH terms:

Gastroparesis
Stomach Diseases
Gastrointestinal Diseases
Digestive System Diseases
Paralysis
Neurologic Manifestations
Signs and Symptoms"





Source:https://preferredresearchpartners.com/gastroparesis-infographic/

Wednesday, September 11, 2013

From August Until Now

As of right now, my medication list is extremely long.

I'm taking:

Linzess 290mg - once daily
Phenergan 25mg - three times daily
Zofran 8mg - three times daily
Vicodin 10/325 - four times daily (for my lower back - I keep straining it vomiting and may have shifted the spinal cord stimulator out of place)
Xanax 0.5mg - four times daily
Celexa 20mg - once daily
Implanon - birth control I need to call and get replaced
Restoril 15mg - twice at bedtime for sleep
Trazadpne 50mg - three times daily
Protonix 40mg - twice daily
B-12 Injections

I feel like this when it's time to take my medications:



I saw my doctor in Augusta about what to do since none of the doctors here are listening to me. He was going to recommend a great GI doctor to me but I guess he got side tracked. I'll have to call him and find out the person. None of the ones up here seem to care and they've managed to convince my husband that this is all in my head due to anxiety. My Augusta doctor wanted me to go to the ER but I refused. Instead, he gave me medications and my sister took me to her house and made my comfortable.

I've been managing to eat small amounts here and there. Yogurt and maybe a bite or two of bagel. Nothing substantial.

I started my period on the 23rd - and it made my GP TEN TIMES WORSE! I'm not the only one who suffers this way. I wonder what the connection is between GP and hormones? I want to bookmark this to come back to it and research it later.

The doctor at Emory yesterday wants me to get an ultrasound for my liver. She's worried about my high liver enzymes. She switched around my medication and wants to see if that helps. I wanted to scream at her that my medicine has been switched around before with no relief! Ugh! But I understand conservative measures first. It just SUCKS. I have to follow up with her in six weeks.

I woke up yesterday and vomited directly into a trashcan. I wonder why I couldn't do that in front of the doctor? *sigh*

Oh well.

But, I have a new phone now so I'm easier to get in touch with. My old phone stopped charging.

Hang in there and keep fighting. I'm working on an article coming up about stress relief and how to manage stress. I just wanted to check in.



The top picture is before I ate, the bottom picture is after I ate.

Tuesday, June 11, 2013

Sleep Deprivation's Effects on the Brain and Your Body

Sleep Deprivation



The immediate effects of skimping on sleep are obvious. You're groggy, unfocused, sluggish and dying for a nap (or a second cup of coffee). Then there are the sneakier signs you're overtired: You're overly emotional, starving and clumsier than usual. Most of the time, a solid night's sleep will solve all these problems.

The average adult needs about seven to nine hours of sleep each night, according to the National Sleep Foundation, but most of us don't even get that much. But getting too little sleep - generally understood to mean six hours or less a night - can be serious - enough to change your genes, even! Source HERE.

I have missed several nights of sleeps due to vomiting, nausea, and/or pain. I started to wonder, how will this affect my body long term? So, I started to do some research, curious as to why the doctors never address my sleeping issues. The articles I found were very enlightening.

First, let's address sleep deprivation. What is it? According to the National Heart, Lung, and Blood Institute, sleep deprivation is,

Sleep deprivation (DEP-rih-VA-shun) is a condition that occurs if you don't get enough sleep. Sleep deficiency is a broader concept. It occurs if you have one or more of the following:

You don't get enough sleep (sleep deprivation)

You sleep at the wrong time of day (that is, you're out of sync with your body's natural clock)

You don't sleep well or get all of the different types of sleep that your body needs

You have a sleep disorder that prevents you from getting enough sleep or causes poor quality sleep



Sleeping is a basic human need, like eating, drinking, and breathing. Like these other needs, sleeping is a vital part of the foundation for good health and well-being throughout your lifetime.

Sleep deficiency can lead to physical and mental health problems, injuries, loss of productivity, and even a greater risk of death. To understand sleep deficiency, it helps to understand how sleep works and why it's important. The two basic types of sleep are rapid eye movement (REM) and non-REM.

Non-REM sleep includes what is commonly known as deep sleep or slow wave sleep. Dreaming typically occurs during REM sleep. Generally, non-REM and REM sleep occur in a regular pattern of 3–5 cycles each night.



The sleep cycle



Your ability to function and feel well while you're awake depends on whether you're getting enough total sleep and enough of each type of sleep. It also depends on whether you're sleeping at a time when your body is prepared and ready to sleep.

You have an internal "body clock" that controls when you're awake and when your body is ready for sleep. This clock typically follows a 24-hour repeating rhythm (called the circadian rhythm). The rhythm affects every cell, tissue, and organ in your body and how they work.

If you aren't getting enough sleep, are sleeping at the wrong times, or have poor quality sleep, you'll likely feel very tired during the day. You may not feel refreshed and alert when you wake up.

Sleep deficiency can interfere with work, school, driving, and social functioning. You might have trouble learning, focusing, and reacting. Also, you might find it hard to judge other people's emotions and reactions. Sleep deficiency also can make you feel frustrated, cranky, or worried in social situations.

The signs and symptoms of sleep deficiency may differ between children and adults. Children who are sleep deficient might be overly active and have problems paying attention. They also might misbehave, and their school performance can suffer.

Sleep deficiency is a common public health problem in the United States. People in all age groups report not getting enough sleep.

As part of a health survey for the Centers for Disease Control and Prevention, about 7–19 percent of adults in the United States reported not getting enough rest or sleep every day.

Nearly 40 percent of adults report falling asleep during the day without meaning to at least once a month. Also, an estimated 50 to 70 million Americans have chronic (ongoing) sleep disorders.

Sleep deficiency is linked to many chronic health problems, including heart disease, kidney disease, high blood pressure, diabetes, stroke, obesity, and depression [and let's go ahead and add in Gastroparesis].

Sleep deficiency also is associated with an increased risk of injury in adults, teens, and children. For example, driver sleepiness (not related to alcohol) is responsible for serious car crash injuries and death. In the elderly, sleep deficiency might be linked to an increased risk of falls and broken bones.

In addition, sleep deficiency has played a role in human errors linked to tragic accidents, such as nuclear reactor meltdowns, grounding of large ships, and aviation accidents.

A common myth is that people can learn to get by on little sleep with no negative effects. However, research shows that getting enough quality sleep at the right times is vital for mental health, physical health, quality of life, and safety.
The Source is HERE.




How much sleep is enough?


The amount of sleep you need each day will change over the course of your life. Although sleep needs vary from person to person, the chart below shows general recommendations for different age groups.



Age Recommended Amount of Sleep
Newborns 16–18 hours a day
Preschool-aged children 11–12 hours a day
School-aged children At least 10 hours a day
Teens 9–10 hours a day
Adults (including the elderly) 7–8 hours a day

If you routinely lose sleep or choose to sleep less than needed, the sleep loss adds up. The total sleep lost is called your sleep debt. For example, if you lose 2 hours of sleep each night, you'll have a sleep debt of 14 hours after a week.

Some people nap as a way to deal with sleepiness. Naps may provide a short-term boost in alertness and performance. However, napping doesn't provide all of the other benefits of night-time sleep. Thus, you can't really make up for lost sleep.

Some people sleep more on their days off than on work days. They also may go to bed later and get up later on days off.

Sleeping more on days off might be a sign that you aren't getting enough sleep. Although extra sleep on days off might help you feel better, it can upset your body's sleep–wake rhythm.

Bad sleep habits and long-term sleep loss will affect your health. If you're worried about whether you're getting enough sleep, try using a sleep diary for a couple of weeks.

Write down how much you sleep each night, how alert and rested you feel in the morning, and how sleepy you feel during the day. Show the results to your doctor and talk about how you can improve your sleep. You can find a sample sleep diary in the National Heart, Lung, and Blood Institute's "Your Guide to Healthy Sleep."

Sleeping when your body is ready to sleep also is very important. Sleep deficiency can affect people even when they sleep the total number of hours recommended for their age group.

For example, people whose sleep is out of sync with their body clocks (such as shift workers) or routinely interrupted (such as caregivers or emergency responders) might need to pay special attention to their sleep needs.

If your job or daily routine limits your ability to get enough sleep or sleep at the right times, talk with your doctor. You also should talk with your doctor if you sleep more than 8 hours a night, but don't feel well rested. You may have a sleep disorder or other health problem.




How does Sleep Deprivation Affect the Brain?



The effect of sleep deprivation.




According to Serendip Studio,

"Sleep deprivation is a commonplace occurrence in modern culture. Every day there seems to be twice as much work and half as much time to complete it in. This results in either extended periods of wakefulness or a decrease in sleep over an extended period of time. While some people may like to believe that they can train their bodies to not require as much sleep as they once did this belief is false. Sleep is needed to regenerate certain parts of the body, especially the brain, so that it may continue to function optimally. After periods of extended wakefulness or reduced sleep neurons may begin to malfunction, visibly effecting a person's behavior. Some organs, such as muscles, are able to regenerate even when a person is not sleeping so long as they are resting. This could involve lying awake but relaxed within a quite environment. Even though cognitive functions might not seem necessary in this scenario the brain, especially the cerebral cortex, is not able to rest but rather remains semi-alert in a state of "quiet readiness." Certain stages of sleep are needed for the regeneration of neurons within the cerebral cortex while other stages of sleep seem to be used for forming new memories and generating new synaptic connections. The effects of sleep deprivation on behavior have been tested with relation to the presence of activity in different sections of the cerebral cortex.








The temporal lobe of the cerebral cortex is associated with the processing of language. During verbal learning tests on subjects who are fully rested functional magnetic resonance imaging scans show that this area of the brain is very active. However, in sleep deprived subjects there is no activity within this region. The effects of this inactivity can be observed by the slurred speech in subjects who have gone for prolonged periods with no sleep.

Even severely sleep deprived people are still able to perform to some degree on a verbal learning test. This implies that some other area of the brain must become active to compensate for the loss of temporal lobe functioning. In fact, activity can be seen in the parietal lobe that is not present during verbal learning tests using rested subjects. Greater activity within this region corresponded to better performance by subjects in research studies. Still, sleep deprived people do not perform as well on these tests as do fully rested subjects. One possible reason for the poorer performance after missing sleep, aside from unregenerated neurons, could be the fact that since the parietal lobe is not usually used to performing tasks such as these it is not as adept at carrying them out. Therefore, when control switches from the temporal lobe to the parietal lobe some speed and accuracy is naturally lost. Interestingly, sleep deprived subjects have been shown to have better short-term memory abilities than their well-rested counterparts (6). Since memory is associated with this region of the cerebral cortex the fact that it is already active in sleep deprived people could make it easier for new synapses to be created, thus forming new short-term memories more easily.

While activity is seen within the parietal lobes of rested people as they think through math problems no corresponding activity is visible within the brains of sleep-deprived subjects. Also, no new area of the brain becomes active while the sleep deprived people work on math problems. Since sleep deprived people can still complete math problems, albeit with less speed and accuracy than a well-rested individual, this data implies that a region of the brain already in use is used for this task.

The frontal lobe is the most fascinating section of the brain with relation to sleep deprivation. Its functions are associated with speech as well as novel and creative thinking. Sleep deprived test subjects have difficulties thinking of imaginative words or ideas. Instead, they tend to choose repetitious words or clichéd phrases. Also, a sleep-deprived individual is less able to deliver a statement well. The subject may show signs of slurred speech, stuttering, speaking in a monotone voice, or speaking at a slower pace than usual. Subjects in research studies also have a more difficult time reacting well to unpredicted rapid changes. Sleep deprived people do not have the speed or creative abilities to cope with making quick but logical decisions, nor do they have the ability to implement them well. Studies have demonstrated that a lack of sleep impairs one's ability to simultaneously focus on several different related tasks, reducing the speed as well as the efficiency of one's actions. A person may be able to react to a complex scenario when suddenly presented with it but, similar to the verbal tests, the subject will most likely pick an unoriginal solution. If presented with a similar situation multiple times with slight variations in the information presented the subject chooses the same solution, even though it might not be as applicable to the new scenario.

Part of the frontal lobe, the prefrontal cortex, has several functions specifically coupled with it. Judgment, impulse control, attention, and visual association have all been related to this region of the cerebral cortex. A recent study has shown that the prefrontal cortex, usually the most active area of the brain in rested individuals, becomes more active as a person remains awake for long periods of time. This region regenerates during the first stage of sleep, giving a person the ability to feel somewhat refreshed after only a short nap. The length of the first stage of sleep cycle is somewhat dependent upon how long the person had previously been awake. The longer the period of wakefulness, the longer the brain remains in the first stage of sleep. When the brain enters into the REM stage of sleep the prefrontal cortex is active once more.

The implications of this data seem to be fairly important in supporting the location of the I-function within the brain. The prefrontal cortex is active whenever a person is awake, no matter how little sleep they have had. Also, this area is active while dreaming. Since the individual is aware of him or herself during both of these instances, but is not aware during the stages of sleep when the prefrontal cortex is shut down, it seems logical that the I-function is located within this region. This indicates that the I-function is what is resting and regenerating during the first stage of sleep. It would be interesting to study prefrontal cortex activity while a person is conscious, but unaware of his or her actions, due to an influence such as drugs or alcohol. According to the results of the sleep deprivation studies little or no activity should be seen in the prefrontal cortex at anytime when the individual is unaware of his or herself.

One of the symptoms of prolonged sleep deprivation is hallucinations. This could also be related to the I-function since it is the system that integrates the input from all other areas of the brain. If the neurons composing the I-function become too taxed then the picture in the head that the I-function produces may be more dissimilar from reality than usual. The neurons, under pressure to continue functioning but unable to perform optimally, create an image useful enough for a person to see most of his or her surroundings. Metabolic activity in the prefrontal cortex can drop as much as eleven percent after a person has missed sleep for only twenty four hours. As a person loses more sleep or continues to receive less-than-adequate amounts of sleep the neurons become even more taxed and the I-function may begin to generate even less coherent images possibly resulting in temporary insanity.

Another piece of evidence supporting the location of the I-function is that mammals have REM sleep whereas cold-blooded animals do not and mammals have a neocortex, located within the prefrontal cortex, while cold-blooded animals do not. REM sleep stimulates areas of the brain used for learning and memory. When a person is taught a new skill his or her performance does not improve until he or she receives at least eight hours of sleep. An extended period of sleep ensures that the brain will be able to complete the full sleep cycle, including REM sleep. The necessity of sleep for learning could be due to the fact that sleep increases the production of proteins while reducing the rate at which they are broken down. Proteins are used to regenerate the neurons within the brain. Without them new synapses may not be able to be formed, thus limiting the amount of information a sleep-deprived individual can maintain.

One of the possible side effects of a continued lack of sleep is death. Usually this is the result of the fact that the immune system is weakened without sleep. The number of white blood cells within the body decreases, as does the activity of the remaining white blood cells. The body also decreases the amount of growth hormone produced. The ability of the body to metabolize sugar declines, turning sugar into fat. One study stated that people who sleep less than four hours per night are three times more likely to die within the next six years. Although the longest a human has remained awake was eleven days rats that are continually deprived of sleep die within two to five weeks, generally due to their severely weakened immune system.

In a way sleep deprivation studies help us to study the relationship between the brain and behavior in a very unique way by observing how a person's behavior changes as the brain shuts down. By taking images of the brain showing where activity is located it is possible to correlate the behavior exhibited by a subject with his or her brain patterns. Just like a person cannot jog for three continuous days a person's brain cannot operate without rest breaks. Since different regions of the brain rest during different stages of the sleep cycle, sleep cannot be cut short.

In fact, if the brain does not receive a break it will soon begin to shut down for periods of micro-sleep. This is essentially several seconds of actual sleep; delta waves that interrupt the regular EEG of an awake person thereby impairing his or her continuity of cognitive function. Micro-sleep generally happens directly before performance failure occurs. Without sleep our brains deteriorate, and if the argument that brain=behavior is true, then our behavior will also suffer accordingly."



What are the Signs/Symptoms of Sleep Deprivation?

Sleep deficiency can cause you to feel very tired during the day. You may not feel refreshed and alert when you wake up. Sleep deficiency also can interfere with work, school, driving, and social functioning.

How sleepy you feel during the day can help you figure out whether you're having symptoms of problem sleepiness. You might be sleep deficient if you often feel like you could doze off while:

Sitting and reading or watching TV

Sitting still in a public place, such as a movie theater, meeting, or classroom

Riding in a car for an hour without stopping

Sitting and talking to someone

Sitting quietly after lunch

Sitting in traffic for a few minutes

Sleep deficiency can cause problems with learning, focusing, and reacting. You may have trouble making decisions, solving problems, remembering things, controlling your emotions and behavior, and coping with change. You may take longer to finish tasks, have a slower reaction time, and make more mistakes.

The signs and symptoms of sleep deficiency may differ between children and adults. Children who are sleep deficient might be overly active and have problems paying attention. They also might misbehave, and their school performance can suffer.

Sleep-deficient children may feel angry and impulsive, have mood swings, feel sad or depressed, or lack motivation.

You may not notice how sleep deficiency affects your daily routine. A common myth is that people can learn to get by on little sleep with no negative effects. However, research shows that getting enough quality sleep at the right times is vital for mental health, physical health, quality of life, and safety.

To find out whether you're sleep deficient, try keeping a sleep diary for a couple of weeks. Write down how much you sleep each night, how alert and rested you feel in the morning, and how sleepy you feel during the day. Source is HERE.


There are ten top ten reasons for sleep deprivation check list if you're still skeptical that can be found HERE.



Top Ten Things Sleep Deprivation Will do to You

According to Web MD, lack of sleep will:

1. Sleepiness Causes Accidents
2. Sleep Loss Dumbs You Down
3. Sleep Deprivation Can Lead to Serious Health Problems
4. Lack of Sleep Kills Sex Drive
5. Sleepiness Is Depressing
6. Lack of Sleep Ages Your Skin
7. Sleepiness Makes You Forgetful
8. Losing Sleep Can Make You Gain Weight
9. Lack of Sleep May Increase Risk of Death
10. Sleep Loss Impairs Judgment, Especially About Sleep

Source is HERE.



According to Tuck, Advancing Better Sleep,

"GI Issues and Sleep
LAST UPDATED ON JANUARY 29, 2018

Anyone who’s living with IBD, GERD, or even the occasional bout of indigestion or heartburn knows that a poor night’s sleep only makes you feel worse.

In fact, GI issues and sleep are so interconnected that scientists have literally referred to the relationship as a chicken-and-egg problem.



Why Stomach Problems Cause Sleep Problems, and Vice Versa

It’s hard to sleep when you’re uncomfortable. Conditions like indigestion, constipation, heartburn, and nausea are all extremely uncomfortable, and even painful at times. If GI issues strike at night, it makes it difficult to sleep. Unfortunately, when we don’t get enough sleep, our stomach problems often persist into the next day and often get worse.

While we sleep, our body keeps working – restoring and repairing our muscles so they can do their job the next day. Our body requires a remarkable amount of energy to function properly. One of those major functions is our digestive process – eating, chewing and processing food before eliminating what we don’t need. Without sufficient sleep, we don’t have enough energy to perform that process as smoothly and as painlessly as we should.

The problems don’t stop there. When we’re sleep deprived, our appetite increases, and we actually begin to crave the kinds of junk food that trigger GI problems. Tired brains release more ghrelin (the hunger hormone), while well-rested minds release more leptin (an appetite suppressant). The more sugary, fatty food we eat, the more we feel it in our waistline – as well as our digestive and bowel movements.

When you’re overweight, GI symptoms worsen. Obese people are much likelier to report waking up from sleep due to chest pain or acid reflux, and experience lower quality sleep overall.

It’s not just the hunger hormone working against us. It’s faulty logic, too. When we’re tired, we’ll do anything for a quick energy boost. As a result, we often turn to caffeine and sugar. Both of these are bad for our digestion and our sleep.

With all this discomfort and lack of sleep, it’s no surprise we end up feeling stressed. Unfortunately, stress itself contributes to insomnia, IBS, and heartburn.




GERD, Heartburn and Sleep

Gastroesophageal reflux disease (GERD) is a chronic condition affecting 10 to 20% of Americans, making it the third most common GI disorder in the U.S. Common symptoms include heartburn and acid reflux.

As many as 74% of sufferers experience nighttime heartburn, contributing to sleep-onset insomnia (difficulty falling asleep). When acid flows back into the esophagus from the stomach, individuals start choking or coughing, either waking them up or keeping them from falling asleep in the first place.



Heartburn and Disturbed Sleep

The same proinflammatory cytokines present with GI diseases like GERD also show up with sleep disorders. When you’re sleep deprived, those cytokine levels increase, worsening GERD symptoms.

GERD is often comorbid in children with autism spectrum disorder (ASD), and their risk increases if sleep issues are also present. Children with autism and sleep problems are twice as likely to experience frequent constipation and heartburn. Subsequent research says the relationship works both ways – autistic children with sleep issues are just as likely to have GI problems as autistic children with GI issues are to have sleep problems.

Children with ASD are also at high-risk for obstructive sleep apnea (OSA). OSA is a form of sleep-disordered breathing where the individual stops breathing during sleep due to a blockage of their airways. Even without autism, people with OSA are more likely to have GI tract conditions like gastric reflux and hiatal hernia, which stem from the spot in your diaphragm where your esophagus meets your stomach.

Although CPAP therapy is extremely effective for treating sleep apnea, there is one side effect that’s especially problematic for people with GERD. Occasionally air enters the esophagus and stomach instead of the lungs, which can worsen GERD symptoms.



IBS and Sleep

Irritable bowel syndrome (IBS) is a chronic disorder of the large intestine that affects between 7 to 21% of the global population, with a disproportionate amount of sufferers in the US and south Asia.

Sleep problems are one of the biggest non-intestinal complaints of IBS sufferers. Difficulty falling asleep, disturbed sleep, and daytime fatigue are commonly reported. Research has also confirmed a positive association between IBS and sleep apnea.

While people with IBS are just as likely to wake up during the night as someone without IBS, they’re more likely to require a bowel movement rather than urinate, and that bowel movement is often accompanied by abdominal pain. This discomfort makes it tougher to fall back asleep.

People with IBS also often have fibromyalgia, which is tied to sleep problems of its own.




Ulcerative Colitis and Sleep

Ulcerative colitis (UC) is a chronic inflammatory bowel disease (IBD) that affects the colon and rectum of 250,000 to 500,000 Americans. Onset typically occurs in adults between ages 15 and 40.

People living with ulcerative colitis deal with abdominal pain, diarrhea and bowel issues on a daily basis, along with the fatigue and stress that comes part and parcel with managing such recurring discomfort.

Recent research suggests that adequate, quality sleep is important for managing UC symptoms as well as preventing the disease in the first place. One study observed that both chronic oversleeping and sleep deprivation seem to be risk factors for ulcerative colitis. Participants who consistently slept fewer than 6 hours per day or more than 9 were much likelier to also have ulcerative colitis.




Crohn's Disease and Sleep

Over 2 million Americans have some form of IBD, whether it’s ulcerative colitis or Crohn’s disease. Crohn’s disease (CD) affects the lining of the digestive tract, with symptoms ranging from abdominal pain and diarrhea to anemia and fatigue. For many people with CD, fatigue persists when the disease is inactive as well.

People with insomnia have a three-fold increased risk of developing a bowel disorder like CD or UC. And, according to a study of over 1,200 patients, disturbed sleep and/or inadequate sleep doubles the risk of flare-ups for those living with Crohn’s disease.

Improving sleep is important not just for managing symptoms of Crohn’s disease, but also for preventing relapse during remission. A study of individuals in remission from Crohn’s disease found that the ones with sleep problems doubled their risk of it becoming active again.





How to Sleep Better When You Have IBD, IBS, or Heartburn

While most GI issues stem from chronic conditions, getting better quality sleep can alleviate the intensity of your symptoms. Try these behavioral strategies for improving sleep despite heartburn or IBD.

1. Follow a bedtime routine.
Develop a bedtime routine that calms your mind, body, and stomach. Take a warm bath or do some calming yoga poses.

Drink a nice cup of herbal tea. Chamomile, lemon balm, and passionflower have all been shown to promote sleep, reduce anxiety, and soothe indigestion.

Melatonin can also be an effective way to induce drowsiness. In one study, it reduced sleep latency (the amount of time it takes to fall asleep), and increased the overall total sleep time for individuals with IBS. Melatonin’s anti-inflammatory properties may also be helpful for sleep-deprived individuals living with colitis, according to another study.


2. Prepare for nighttime disruptions.
If you’re living with chronic heartburn, abdominal pain, or digestive issues, recognize now that you will expect some nighttime awakenings throughout your life. However, rather than getting frustrated, accept that these will happen and take steps to relax yourself back to sleep afterwards.

If you find yourself lying awake in bed for more than 20 minutes, get up and leave your room. Go do something calm somewhere else, like reading a book by a soft lamp, until you feel tired again. You don’t want your brain to come to associate your bed with sleeplessness.

Also clear your bedroom of electronics, especially clocks which build frustration as you watch the hours tick by.



3. Pay attention to your diet.

People with IBD and GERD are used to getting diet advice, so it’s no surprise that we’re including it as a tip here. Avoid heavy meals and spicy or sugary trigger foods late at night, at least 2 hours before bed.

Managing your diet will help keep your weight in check, too, minimizing your risk of heartburn. Never lay down after you eat, and wear clothes that are comfortable and loose, especially when going to bed. Too-tight clothing increases pressure on your stomach, leading to heartburn and GI issues.

Take care during the day to keep your blood sugar balanced, so as to avoid nocturnal hypoglycemia. Your blood sugar already lowers naturally while you sleep, but people with GI issues are more at risk. To keep your blood sugar steady, avoid overly sugary foods all day long, not just before bed. Instead, eat smaller meals throughout the day to stay in balance.


4. Change up your sleep position.
Stomach sleeping is terrible for acid reflux, since it places your esophagus in line with your stomach. Instead, sleep on your side or your back.

If you lie on your side, opt for your left side to reduce the pressure on your heart and other organs. If you sleep on your back, use a wedge pillow or raise the head of your bed with 6-inch risers to keep your esophagus above your stomach and reduce acid reflux.

Those with ulcerative colitis should lie on their back. If you’re more comfortable sleeping on your side, choose the side opposite to the side of your colon that gives you the most trouble. If you’re still feeling pain, avoid painkillers and use a heating pad instead. Painkillers like ibuprofen can actually irritate your colon, making you feel worse.


5. Reduce stress.
Stress builds anxiety and the kind of spiraling thoughts that keep insomniacs up at night, just as it makes your stomach feel like a spiral of its own.

To reduce stress, try incorporating one or more of the following into your life: yoga, meditation, or aromatherapy. Practice deep breathing or relaxation exercises before bed. If you can’t get the worries to stop, write them down in a journal to free them from your mind.


Additional resources:

Studies and research
“Sleep Dysfunction and Gastrointestinal Diseases”: This review details at-length the physiology of sleep and the immune system, and its connection with various GI diseases.

“Sleep disturbances and inflammatory bowel disease: a potential trigger for disease flare?”: Researchers provide an overview of the sleep problems related to IBD, and theorize whether circadian rhythm disorders may play a role in flare-ups of Crohn’s disease or ulcerative colitis.

“Association of irritable bowel syndrome and sleep apnea in patients referred to sleep laboratory”: This study examines the prevalence of IBS in patients with sleep apnea.

“Sleep and Emotional and Behavioral Symptoms in Adolescents with Inflammatory Bowel Disease”: Researchers noted that teens with IBD experienced sleep problems that correlated with other problematic behaviors such as aggression and depression or anxiety.


Advocacy groups and organizations:

The CDC’s portal on inflammatory bowel disease (IBD) provides up-to-date research and demographic analysis on Americans living with ulcerative colitis or Crohn’s disease.

The International Foundation for Functional Gastrointestinal Disorders is a non-profit focused on raising awareness, funding research, and providing helpful resources and treatment advice for people suffering from gastrointestinal and motility disorders.
The Crohn’s & Colitis Foundation provides educational resources online, and helps patients and caregivers find local support groups, doctors and other healthcare providers near them.


Blogs and social media:

Read the latest news in GI disorders and find healthy recipes on popular online blogs such as Living with Gastroparesis, Gutsy By Nature, IBD News Today, and My Gut Health Today.

Connect with others for support and share your advice for getting better sleep on online forums such as the Constipation and GERD forums on Treato; the GERD, Acid Reflux, IBD, and IBS subreddits; CPAPtalk forum; the Crohn’s & Colitis Foundation Community Forum; Crohn’s Forum; and the IBS Self Help and Support Group."

Their website, listed above, again is: https://www.tuck.com/gastrointestinal-issues-and-sleep/

Friday, August 31, 2012

GPACT







I found two pictures, courtesy of GPACT that made me feel a bit better. I'm still vomiting, even after the ERCP. I'm still in pain from healing as well.

I met with the knee doctor yesterday and he's just waiting on the insurance to improve the trial.

More information can be found HERE.

So, I guess I'll wait. Hopefully, if I can control the knee pain, the vomiting will be cut in half since it's my pain response. I'm trying to figure out if the vomiting is actually coming from my gastroparesis or if it's caused by pain. It's a hard thing to determine.

I just feel very tired and weak. I have a cold, too. I've been sleeping a lot the past two days hoping I'll feel better.

GPACT could really use your help if you are interested in donating to help find a cure. The information can be found HERE.

They write on their Facebook page:

G-PACT Fact, Day 31- As we close out DTP Awareness Month 2012, we want to thank all of you for your support!

G-PACT is a non-profit which was founded on Aug. 23, 2001 by a group of patients. Most of us are on disability from this (and/or
a combo of other conditions) and saw the needs that so many patients had. We fight this every day along with you. We are all volunteers which can make this very difficult as our health is very unpredictable. You understand! A small handful of volunteers have run G-PACT, which has become international and reaches out to over 30 countries and all 50 states, from hospital beds, nursing homes, and home computers all over the world.

An added challenge is that we do not work from a centralized location and are scattered across the world. While this allows anyone to get involved, sometimes it can also take us a little longer to get everything done.

These are two unique challenges we face as we fight for you. We volunteer up to 80 hours a week during busy times, so we appreciate your patience and support as we work hard to bring you the best that we can given the circumstances! We are inspired to continue our work because we see progress and feel that our work has made an im-PACT.

There is still time to do things from this month. We extended the media letter writing campaign in order to accommodate some events taking place this weekend. Please send us your letters so we can begin putting final details into the project. Awareness and a cure is important as the death of another member harshly indicates.

If you would like to help us in any way to continue our work, we could use additional funding to continue our work, volunteers to lighten the load on a few of us, or other contributions to help us get things done. Increasing awareness is vital and awareness events are appreciated to help spread the word. If you would like to do anything, please contact us at contact@g-pact.org. Donations can be made through Paypal at accounting@g-pact.org or on our website at www.g-pact.org/giving.html. There are many ways you can help, even if not financially. We appreciate hearing from you and knowing you support the work that we do.

We do this for you and we fully understand what you are going through! That's why we are so passionate!

Even though today is the last day for DTP Awareness Month 2012, we do not stop. We do this year round. Look for activities coming up in 2013 and many ways to increase awareness and get involved in some of our political advocacy work. We are encouraged by the approval of Linzett yesterday, and hope to see many more in the near future until everyone has something that works well for them. We all want to eat normally again! :D

Saturday, August 18, 2012

Day 3 - Low Oxygen & Heart Murmur

The nurse just woke me up to give me medicine. Apparently, I had fallen asleep, sitting up, with my laptop in my lap at about 4am. My Oxygen intake dipped down to about 80. It's not supposed to be below 92. So, now I'm on oxygen today.

*grump*

I've called my nurse four times asking for medication. I guess when the bag runs out, she'll have to be in here eventually .... or I can just vomit on her shoes.

I'm really tired but was able to sleep some last night. I'm just tired at the moment and bored.

...and my nurse just cussed out the front desk. =)

I have been calling the front desk since 7am (because well, I didn't have to number to call her directly, so I hit the nurse call button). The front desk never told her I called so she came into my room to check on me.

I told her that I needed my medicine while dry heaving into a bucket. She got angry, started yelling, wrote her direct number on the board so I can call her directly when I need something. She then proceeded to storm out after giving me my medicine and yelling at the front desk.

She have me two Dilaudid. She said since I was written for one to two, and since she remembers me from last time, she said she knew I had chronic pain and upped the dose so it would help longer. She's a great nurse and I had her the last time I was here. She remembered me and I remembered that she's the one I can't play zombie games around! =)

The nurse got my on call doctor to come and take a look at me because of my blood pressure. It's been REALLY high. The bottom number is the 110s. So, the doctor listened to my chest and found a heart murmur. They're going to start me on blood pressure medication and take me down for a test for my heart. They're going to sonogram it to make sure that there's nothing sinister about the murmur. So, I guess that's a good discovery! I didn't know about that one.


My hospital room view.

Saturday, July 21, 2012

Bitterness

*Please don't take offense to what I have written below. I'm not targeting anyone or anything - just writing down my own personal feelings at the moment. Please don't be angry or think I'm talking about anyone/anything in particular. Just getting out some feelings.*

Bitterness. That about sums up my mood for the Summer. I know that this entry is going to sound selfish but I need to get it out there.

I'm just tired. I feel like I haven't had a break. All of my friends are gone for the Summer - off visiting family, trips to the beach, and having fun. I'm stuck here trying to work on things and that's difficult when I'm vomiting six to eight times a day. Just picture yourself having food poisoning 24/7 and being nauseated all day, it's almost like that. I sat in the bathroom and cried for an hour tonight - just because I was in so much pain emotionally and physically. =(

I'm just insanely jealous. Where's my vacation and my trip to the beach? I spent my 10 year dating anniversary with my husband in the hospital. It just makes me incredibly depressed. I get stuck doing work because I'm home and I'm not going anywhere. It's not that I don't mind doing work or anything like that but I want to go to the beach with my husband for a week and block out school completely.

I sometimes feel like I'm taken advantage of because people know I'm always home. It's why I've been off of the grid for the past three days. It's not that I mind helping or anything like that - I feel like it's just not fair. I know that life isn't fair, but damn. I know that feeling is unfounded, but it's in the back of my mind - chipping away. It makes me even more sad.

I am tired of going to the doctor and traveling with a bucket. Monday is my psych evaluation to make sure that I have the right mental facilities for the permanent implant trial. The leads will be placed inside of my epidural fluid and the wires will come out of my back into a pager sized battery. I will wear it for 5 to 7 days and I will be unable to take a shower with the device in as well as to be unable to move certain ways. I hope it works for my knee.

Also, I'm trying to get the endometrosis in check. There is a special pharmacy that the Lupron is coming from. They will talk to my insurance to get my insurance to cover it and then the doctor will administer the injection. I will have two over the course of the six months. If I don't notice an immediate change, they're going to go in surgically and clean the endometrosis.

I haven't heard back from the Motility Specialist about whether or not the Smart Pill is covered. I should probably call her on Monday and make sure she hasn't forgotten about me. She wants to confirm that I have gastroparesis. I want to throw up on her shoes. I don't like her very much.

Anyway, I'm at home, wallowing in self pity and loathing because I can't do anything other than work or play on my computer. That gets old after a while. I've been reading on my Kindle a lot. It's nice to escape into someone else's world for a while.

I'm exhausted right now and it's only 8pm. I haven't done anything today besides read and watch a movie on TV. My husband and roommate went to see the new Batman movie. I hope that my stomach will stay under control so that I can watch it too. Right now, I'm nauseated and my stomach is swollen and bloated. I have intense amounts of pain from the spasms coming from my stomach muscles. My diaphragm is sore from vomiting violently. My throat is swollen and burnt from the stomach acid that I can barely swallow pills. I've had two pills get stuck in the back of my throat today.

I just want to go back to sleep. When I sleep, there's no sickness. It's peaceful - except for the nightmares.

Thursday, July 19, 2012

Visit with Dr. Levitt - More Surgery?

I went to visit my OB/GYN for my usual checkup and my 2.8cm cyst that the GI doctor found while doing a CT scan. I had an ultrasound done, which was extremely painful and my regular exam was extremely painful, and then found that I have another cyst, that is 2.0cm. The previous one had ruptured and now I have another.

I could have cried.

It's hard to tell when the previous one ruptured because of my stomach pain. It's hard to tell the different pains a part, if that makes sense. But now, I get to look forward to another cyst rupturing. He wants me to take Depot Lupron. This is an injection given once every three months for up to six months - so I would have two injections. If this does not work, then he is going to go in laproscopically, through my belly button, and clean out everything - all of the scar tissue and endometrosis. So, I might have more surgery. I'm trying the injection first. I really don't want any more surgeries.

I'm trying to take care of EVERYTHING that causes me pain so that I can tell what's *just* coming from my stomach.

I'm just really frustrated. I mean, all of this is impacting my life. I want a normal life. I want to just go to class in the fall without any problems. But now, I may have THREE possible surgeries in the fall. How do I deal with that and class? What do I do? Do I just register for Maymester classes? Even if I take an online class, I may miss some of it because I will be on medicine. The nerve medication I'm on now makes me slur my words and makes me sound like the town drunk. I didn't take it today so that I could talk to my doctor without him thinking that I had been drinking.

My drug list is getting longer. I had to buy a bigger pill caddy. I know all of this sounds like whining but I'm just so tired of it all. I'm tired of all of the medication, tired of being under the influence of medication all of the time, tired of not leaving my house, tired of being dehydrated, tired of vomiting, tired of having more problems that may need surgery - I mean, it's a lot to deal with. Sometimes, it seems like no one understands. It just hurts even more. I know my friends are tired of hearing about it and that's why some of them don't come over anymore. That's like a knife in my heart.

It just seems to be one thing after another. I'm not in control and I don't know what to do. Please cross your fingers that this injection works. If not, it'll be another surgery for me. It's not a bad surgery - they go through my belly button - but it's still surgery. And I think I've had enough of those.

Monday, July 9, 2012

Boston Scientific - Electrical Stimulator

I went to the pain management doctor for my knee. They would like to install a device, permanently, near my spine, attached to a ligament.

The link is here: http://www.bostonscientific.com/procedure/ProcedureLanding.bsci/,,/navRelId/1000.1002/method/Procedure/id/10001261/seo.serve

This also tells more about it: http://en.wikipedia.org/wiki/Spinal_cord_stimulator

This is a really HUGE decision for me. I'm not sure what to do. If the doctor does decide to put the electrical stimulator in my stomach for gastroparesis then the two would interfere. To be honest, my stomach pain and vomiting is eclipsing the knee pain. My husband thinks that if I get the implant and stop the pain in my knee, that I won't vomit so much. My pain response is to vomit. Also, gastroparesis causes me to vomit too.

I think I'm going to do the trial and see if it provides so relief. I can't tell you how badly I'd like to get out of the house, eat at a nice restaurant, and maybe catch a movie. But most of all, I want to be able to hike again. I miss hiking. It was the one thing I loved to do. Now with the gastroparesis, I can't do much but sit at home near a bathroom.

I did manage to make it to Columbia and Augusta this past weekend with the bucket in the car. I doped myself up on all of the antinausea meds I was given and hoped for the best. The traveling took a lot out of me and I slept for the rest of the weekend. I woke up sick on several occasions. I want to be able to drive my stick shift again. I hate automatics. There's so many things I've taken for granted that I wish I hadn't.

So far, I've had:
Gastroparesis
Ovarian Cysts
Endometrosis
Osteoporosis
A Septic Knee
Meniscal Tear
Lateral Release
Broken Right Arm (which started all of this mess)
Hypoglycemia

When I see all of my friends having kids, I sometimes feel like I want kids... but I wouldn't want to pass my awful genes to anyone...that wouldn't be fair. I'm like a walking case for Doctor House, even though he might kill me five times to help me. How do people manage to have kids with gastroparesis? I can't imagine how intense the morning sickness would be. I throw up six times a day, at least. Plus, it burns my throat and mouth because I have nothing left in my stomach. Half of my taste buds have been burnt off so that I can't taste anything. I'm not hungry in the slightest. The doctor also put me on lyrica, which is a nerve pain pill. I haven't noticed much of a difference yet.

Back to the big decision...I have to get a psychological evaluation before they can even try the trial because my insurance mandates it. I have that on the 23rd. I'm also meeting with the motility specialist on the 11th. I just hope that no one puts me back in the hospital. I've been so weak and tired lately. I have been trying to drink as much as I can but like clockwork, every 2 hours after I eat or drink something, it comes right back up. I'm really tired of bleaching my toilet.

Wednesday, June 27, 2012

Severe Emotional and Physical Pain

For the past few days, the abdominal cramps have gotten so much worse. I've had esophageal spasms more than I usually do. My stomach feels like I've been sucker punched and I have NO interest in eating at all.

I've been keeping a food diary to keep track of what and when I eat and I haven't eaten very much in the last week. I miss food. I hate that food is the enemy. I don't understand how I'm not losing more weight though. I mean, my weight, I've lost about 15 pounds total, but now it's staying steady. But I'm not really eating...so I don't understand.

My friend has been staying with me and she helped take care of me this past weekend when everyone was gone. My husband was at a convention, my roommate was in San Fransisco, and my other roomie was visiting her parent's. I'm glad my friend was here because I went hypoglycemic about four times. This is still new to me but she was able to make me eat and get some food in me, it didn't stay down, but it got me to stop slurring my words so I guess some of it stayed down.

I'm frustrated and tired. I just want to give up. I've got a lot of unnecessary stress on me right now and it's making me feel worse. The depression has really hit me today and usually, I'm not a depressed person. I had dreams last night and each dream had me buried alive or trapped in some way. It was horrible.

I'm worried about school and if I don't take this one class I need then I have to wait ANOTHER year to graduate. However, at the rate my stomach is going, I won't be able to take a class because I vomit about 6 to 8 times a day, even if there's nothing left. It burns. My throat is so swollen that I can barely swallow pills. I have no energy today. I feel drained. Emotionally drained too, like I have just gotten done with a funeral.

I'm really just upset and sick. Last night was horrible. I need to get out of this house, somehow, for a little while. I really want to go and watch Abraham Lincoln Vampire Hunter to get out of the house. I know that the smell alone will make me ill but I wonder if it would be worth it, just to get out. Or even have my husband drive me around the neighborhood to the park so I can swing for a bit. I just need to do SOMETHING! I feel useless and unloved, which is stupid because I know I'm loved.

My birthday is on Saturday. I was looking forward to my party because it's zombie themed and everything is just going to be amazing. But now, I just am so lethargic that I feel like, why am I doing this? I don't have the energy for this? I just feel so extremely tired - like the fight is gone out of me. I'm tired, so very tired.

Monday, June 18, 2012

Woke up at 6am - and My Stomach Hates Me

My stomach managed to wake me up and I went straight to the bathroom and vomited. So much for that. I thought I was having a good day yesterday. I vomited up some of the food that I ate at the wedding reception, some of it wasn't digested (OK, I know that's probably TMI - but my blog is to help keep track of these things to tell the doctor). I have very intense stomach cramps. I also feel very tired, exhausted, and fatigued even though I slept yesterday and some last night.

I just took:

1 pain pill

2 anti-spasmotic pills

1 anxiety pill

1 muscle relaxer

2 anti-nausea pills

Between all of those, and I hope I can keep those down, hopefully I'll go back to sleep. I just hate waking up with that immediate need to be sick. And, as per usual, I whacked my knee on the side of the toilet again.

I just want to feel better. I'm going to call and make an appointment with the motility specialist. She's at Crawford Long, so that's a bit closer to me to get to. When I do drive, I have to drive around with a bucket. I've gotten pretty good at vomiting outside of moving cars though. I don't feel safe driving because I might get sick while I'm driving.

I need to find a primary care doctor closer to my house as well. I feel bad just walking in and saying, "Hey, I've got gastroparesis and I'm your new patient!" I would like all of my records in one place, though. My knee records, my stomach records, my records from my old primary care doctor. I feel as though my medical records are scattered all across Atlanta.

I have to say that it was good to leave the house for a little bit. I've been confined here since March since my GP has been so severe. I slept on the car ride back because the nausea started to hit. Then, I went to bed and didn't wake up until about 10pm or so. This new medication knocks me out.

The medicine that helps the most is the muscle relaxer. It relaxes my stomach enough for me to eat and not be in as much pain.I don't know if they'll keep me on it or not but it's the only thing that seems to help.

Maybe one day this Summer, I will get to go to the beach! I miss the salty smell of the air... there's nothing quite like it. I'm leaving Wednesday or Thursday for a car ride up to Connecticut for convention for my fraternity with my friends. I hope that I can make it up there with no problems. I'm more worried about the car ride. If I don't eat while at convention, I won't be sick. I know that sounds absolutely horrible. I didn't each much before or after the wedding, so I didn't get sick like normal. So, I'm going to have to monitor myself very closely with food. Most of the time, I'm not hungry anyway. But, social conventions seem to be centered around food and drinking. I can't do either.

Tuesday, June 12, 2012

Isolation & Sadness

I managed to sleep most of the day. I feel exhausted and lethargic. I was able to keep some of my anti-nausea medications down, at least.

G-Pact has a lot of great information about my disease that you can read about. You should read the information listed there to understand what I'm dealing with and going through.

I have to take things day by day.

This illness can be a very isolating one.

This illness can affect one's quality of life because of the depression and isolation that comes with it. It is also frustrating as well that it can be hard to predict what I can do from day to day. I know I have had days when even what is usually the safest for me still aggravates my digestive system. I can't tell you how guilty I feel for not being able to do things or even go to a movie with my friends. I really want to, but I'm not physically able. My heart is in the right place, but making me feel worse about it doesn't help. Trust me, I guilt trip myself enough without any help.

There can be a fear of the unknown. Unfortunately sometimes this fear can lead to my friends getting hurt by assumptions or misunderstandings. Maybe I should offer to let them come to the doctor with me so that they can hear the things I'm actually dealing with.

My whole world shrinks because I become more limited in what I can do. I need to have gatherings at my place right now if my friends want to hang out because car rides make me sicker and I have to ride around with a bucket. I'm just not sure how to address the problem. I want to feel better but the thought alone isn't going to magically fix my stomach paralysis.

I meet with the doctor on Wednesday. I hope he'll be able to give me by biopsy results and help me figure out the next step to take.