The month of September is dedicated to help bring awareness to a very much misunderstood disease, Chronic Pain (C/P). In the USA, Chronic Pain has finally been inducted by the American Medical Association as a disease, with its own diagnostic code even though it encompasses multiple over-lapping conditions and diseases.
As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively. I have argue
d with physicians and meet with pain specialists at the pain clinic every month. I have bullied hospital nursing staff. I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…
Yet the levels of Vic’s pain force us to eat humble pie. We have to go back time after time asking and even begging for pain medication.
Tracy at http://ohwhatapain.wordpress.com/ is a passionate advocate bringing awareness about this chronic illness, and this month she has a special project. Please visit Tracy’s blog. Even if you are not directly involved chances are there is someone in your life that is. I have a headache (maybe) once a year. I never have a tummy ache, earache, toe-ache or any ache as a matter of fact. Yet I am a specialist on the subject of pain… I will therefore participate as a caregiver of someone who suffers debilitating chronic pain…..
So from Tracy’s Blog this month and all month-long;
Please answer the following questions:
- What condition(s) do you have that have led you to living with chronic pain?
Vic has a frozen abdomen, Osteogenesis Imperfecta, Addisons Disease and severe Endometriosis.
- “Frozen abdomen,” is a condition in which repeat surgeries to remove the fibrous bands create so much internal scar tissue that further surgical intervention becomes dangerous. Inflammatory conditions like appendicitis, internal infections and abdominal surgeries can cause the abdominal tissues to bind together, forming scars. Adhesion formation in the abdominal or pelvic cavity can cause debilitating pain, nausea, vomiting, cramping. Patients with intestinal obstruction may experience constipation, diarrhea or a combination of both. In severe cases, adhesions can cause intestinal obstruction, bowel strangulation, complications with childbirth and infertility.
- Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” The term literally means “bone that is imperfectly made from the beginning of life.” A person is born with this disorder and is affected throughout his or her lifetime. http://www.oif.org
- Addison’s disease (also chronic adrenal insufficiency, hypocortisolism, and hypoadrenalism) is a rare, chronic endocrine disorder in which the adrenal glands do not produce sufficient steroid hormones (glucocorticoids and often mineralocorticoids). It is characterized by a number of relatively nonspecific symptoms, such as abdominal pain and weakness, but under certain circumstances, these may progress to an Addisonian crisis, a severe illness which may include very low blood pressure and coma.
The condition arises from problems with the adrenal gland itself, a state referred to as “primary adrenal insufficiency”, and can be caused by damage by the body’s own immune system, certain infections or various rarer causes. Addison’s disease is also known as chronic primary adrenocortical insufficiency, to distinguish it from acute primary adrenocortical insufficiency, most often caused by Waterhouse-Friderichsen syndrome. Addison’s disease should also be distinguished from secondary and tertiary adrenal insufficiency, which are caused by deficiency of ACTH (produced by the pituitary gland) and CRH (produced by the hypothalamus), respectively. Despite this distinction, Addisonian crises can happen in all forms of adrenal insufficiency.
- Endometriosis A major symptom of endometriosis is recurring pelvic pain. The pain can be mild to severe cramping that occurs on both sides of the pelvis, in the lower back and rectal area, and even down the legs. The amount of pain a woman feels correlates poorly with the extent or stage (1 through 4) of endometriosis, with some women having little or no pain despite having extensive endometriosis or endometriosis with scarring, while other women may have severe pain even though they have only a few small areas of endometriosis. Throbbing, gnawing, and dragging pain to the legs are reported more commonly by women with endometriosis. Compared with women with superficial endometriosis, those with deep disease appear to be more likely to report shooting rectal pain and a sense of their insides being pulled down. Individual pain areas and pain intensity appears to be unrelated to the surgical diagnosis, and the area of pain unrelated to area of endometriosis.
Endometriosis lesions react to hormonal stimulation and may “bleed” at the time of menstruation. The blood accumulates locally, causes swelling, and triggers inflammatory responses with the activation of cytokines. This process may cause pain. Pain can also occur from adhesions (internal scar tissue) binding internal organs to each other, causing organ dislocation. Fallopian tubes, ovaries, the uterus, the bowels, and the bladder can be bound together in ways that are painful on a daily basis, not just during menstrual periods.
Also, endometriotic lesions can develop their own nerve supply, thereby creating a direct and two-way interaction between lesions and the central nervous system, potentially producing a variety of individual differences in pain that can, in some women, become independent of the disease itself. http:
2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )
Vic has lost her spontaneity. She has to plan every single outing well in advance whether it is a trip to the hairdresser or the doctor, watching Jon-Daniel play cricket or having a cup of coffee with a friend. Vic has lost her ability to live. She merely breathes.
3. Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
4. What do you miss the most that you feel you gave up because of chronic pain? What do you do now to fill that void?
Playing with her boys…. Vic was never able to play ball or “touches” with the boys. Vic spent a lot of time reading to the boys when they were younger. Now her health and pain is at levels that prohibits any compensatory actions.
5. What have you heard from others that made you feel better?
“It is okay to give up….”
6. Do you feel that people view/treat you differently? How?
People get tired of hanging around people who are always ill and in pain. They avoid Vic. The average person does not know how to handle her raw pain and they are scared that pain or “bad luck” is contagious. Vicky is viewed as someone who is past her “sell by” date.
7. What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)
Vic used breathing techniques earlier in the diseases timeline. Now it is too painful. When Vic has a good day she will do something extravagant like pick the boys up from school and take them for a milkshake. It allows her for a brief moment to believe that her life is normal. It is a form of a coping mechanism. Living the moment and pretending that her life is “normal”
- https://tersiaburger.com/2012/07/16/467 (Tips for dealing with people in pain)