Stickers on a chart seems like a juvenile system, but it is a good way of measuring progress, if only for a clear visual model. It’s a big, colorful way to let me know that I went another day where I remembered to take all of my meds and kept my apartment clean to a basic level. =v= If you want, you can make it a source of fulfillment, too. For no reason other than you begin to arbitrarily assign value to things you have to earn, I decided I earn a small sticker for every time I do one of the following: finish a project; unload the dishwasher, fold the laundry AND put it away, shower, some other chore that can be hard without adequate spoons or just in general because life is hard especially when you’re ill. My calendar is full of silly stickers and it helps me clearly see which day of the month I’m on, as well as have visual reassurance that I’m making it through each day, even though there’s a lot to do.
I’m trying to cry quietly so my parents don’t hear me.
I’m so sick of being sick, and today it’s just getting to me more than usual. I have to keep asking my parents for more money to pay for all these doctors and medications- they’re giving me the money, but I feel so bad that on top of college they have to pay for all this crap. Six doctors, six prescriptions, scans and bloodwork… it adds up so much and it feels like I’m constantly in a doctor’s office being diagnosed with new problems while barely managing the current ones. I try so hard to stay positive but it’s just so hard being so sick all of the time. I spend at least $1,100 per month for medications and appointments and treatments. In a year that’s more than my college tuition. I feel like such a financial burden and emotional burden, but I can’t pay for all of this without my parents’ help. I can’t even make enough money to buy food for the month with my part-time job.
I know I’m whining but it’s just so difficult and it’s really getting to me today.
I almost didn’t have enough money to pay for this month’s stock of medications because I was a clod and pre-ordered Happy Home Designer. It’s so expensive to just keep existing that I feel exponentially bad for splurging on luxuries. I’m officially broke as a joke. It doesn’t help that I got prescribed yet another medication today. That brings the grand total to six prescriptions, and then the vitamins I have to take are a whole different can of worms.
//insert spiel about how there’s a Donate button on my blog//
Even my parents treat my illness like a burden- they’ve been to the doctor with me and heard my diagnosis but still treat me like I’m pretending to be sick and in pain every day. As if I enjoy it. As if I use it to get out of doing things. It’s such a painful knot in my stomach to know that my parents don’t believe me or what I’m going through, and that to them it’s an inconvenience and I’m simply lazy.
Y’all should consider following thatdisabledfeel! It’s a place for physically disabled people to vent, have a good laugh at the things able-bodied people say to us, or just share your feelings about your experience.
NOTE: This blog is specifically for physically disabled people. If you are mentally disabled/ill with no physical disability, it is the admin’s request that you do not follow or reblog. There are blogs specifically for mental illness/disability. Able-bodied people especially should not follow or reblog, by request of the admin.
**people can reblog this signal boost regardless of ability/disability!
Thank you to everyone who is still passing this around! thatdisabledfeel just hit 200 followers and I couldn’t be happier. It’s a great blog and safe space for physically disabled people. Definitely keep reblogging this so more people can hopefully see it and use it as a resource and community for themselves!
Me:
//is chronically ill// Some Able-Bodied Person:
How come you're sick all the time? You need to drink more water, maybe take some vitamins and work out? :))))
I got up early, took a decent nap, portioned out my meds, and now I’m gonna eat leftovers! I’m on top of it today. I even took down my dirty laundry and got a stain out of the floor! Now I’m just going to relax and make sure I have the energy for work tonight.
Polycystic Ovarian Syndrome (PCOS) is one of the most common endocrine disorders that affects in numbers as high as 1 in 10. While it has been recognized and diagnosed for over seventy-five years, less than 50% of women are diagnosed due to the lack of knowledge, and awareness. PCOS cannot be diagnosed with just one test, and can often be overlooked due to symptoms varying from person-to-person. In order to be diagnosed with PCOS, you need 2 of the following present: androgen excess, irregular/absent menstrual cycles, and/or ovarian cysts.
The month of September is Polycystic Ovarian Syndrome Awareness Month, and here is what you need to know.
PCOS is a condition in which the sex hormones in a female’s body are imbalanced, which can cause ovarian cysts, weight gain, changes in menstrual cycle, infertility, and other symptoms. An early diagnosis is important with PCOS because the condition has been linked to an increased risk of multiple medical issues including insulin resistance, type 2 diabetes, high cholesterol, high blood pressure, and heart disease. PCOS has been known as the “Silent Killer”. There is no exact cause of the condition, although it has been linked to genetics and environment. While there is no known cure for the syndrome, there are treatment options to manage symptoms, and improve your PCOS health.
When it comes to symptoms, it varies for person-to-person, which often makes a diagnosis difficult due to some individuals living with few symptoms.
Weight gain or difficulty losing weight
Dandruff
Acne
Cysts on ovaries
Obesity
High cholesterol levels
Skin discolorations (dark, thick velvet like patches)
Elevated blood pressure
Insulin resistance
Repeated miscarriages
Thinning hair
Infertility
Pelvic pain
Male-type hair growth (hirsutism)
Irregular/absent menstrual cycles
Anxiety and/or depression
Regular menstrual cycle vs. PCOS menstrual cycle | Source
How is PCOS diagnosed?
Medical History Your doctor will ask questions in regards to your past medical history, as well as your family’s. Studies have shown that if a parent has PCOS, there is a 50% chance that the daughter will have PCOS as well. Questions commonly asked will include details of your menstrual cycle, miscarriages, trouble with weight, depression, and other medical history.
Physical Exam A physical exam will include height, weight, and blood pressure. As well as examining your body for any signs, such as excess hair growth patterns, skin discoloration, thinning hair, and acne. Be sure to let your doctor know of any hair growth patterns that maybe overlooked.
Blood Work Your doctor may order numerous labs, but most common are a hormonal panel including testosterone, DHEA, estrogens; fasting glucose; insulin; lipid profile.
Ultrasound An ultrasound is an exam that will show images of your ovaries, uterus, and endometrial lining . It is often preformed to check for ovarian cysts, which is a common symptom of the condition.
How is PCOS treated?
Lifestyle changes, medical management, and medication are the best ways to treat the syndrome because there is no cure for it. It is important to find a doctor that you are comfortable, and satisfied with, because it is vital to keep in contact when it comes to managing the syndrome. Treatment varies based on your symptoms, if you are trying to conceive, and overall health.
Birth Control Pills – Extremely common in medications prescribed, contraceptive will regulate menstrual cycles, reduce male hormone levels, aid in clearing up acne
Metformin (Glucophase) – Metformin is used to treat diabetes, however it is beneficial to people with PCOS because many have insulin resistance. The medication helps in regulating the amount of glucose (sugar) in your blood. It has shown to lower testosterone levels, which improves symptoms such as abnormal hair growth, ovulation, and weight gain.
Spironolactone –Spironolactone is a diuretic (often known as a water pill) that is prescribed for high blood pressure or those with fluid retention, however it has other benefits that aid in PCOS health. The medication is often prescribed along with oral contraceptive pills for those who have hirsutism because it works by lowering androgen levels in the body. Androgens are hormones that people, both male and female, have in their bodies, but males have higher levels of the hormone. Androgens cause hair patterned hair growth on the face, chest, and stomach, as well as acne, that some people with PCOS have. Because Spironolactone can cause birth defects, therefore it cannot be taken during pregnancy.
Lifestyle Modifications – Dietary changes and exercise are important when it comes to managing PCOS because those living with the condition often have insulin resistance, and difficulty maintaining or losing weight. Eating well, and being active, can improve PCOS symptoms on their own. When it comes to dietary changes, it varies for everyone, however, nutrition is very important because the foods we put into our bodies affect us differently than others. So whole foods - fresh vegetables, lean meat, and focusing on low-GI foods, no processed or refined food, limiting dairy are typical PCOS meal plans. Keep in mind, some find keto, vegan, or paleo to be ideal for them.
Fertility Treatment – 70% of women diagnosed with PCOS have infertility, however, through fertility treatments and medication, many conceive and give birth to healthy children. Treatments include ovulation cycles, insemination, or IVF. Medications include Clomid, an oral medication that stimulates ovulation, and is often the first medication prescribed. Letrozole is another oral medication similar to Clomid by stimulating ovulation. It is determined by your doctor which treatment is best for you, and dosage.
What is Insulin Resistance?
Insulin is a hormone that is produced by the pancreas. When insulin is released into the blood stream, it is the essential hormone that has many actions throughout the body such as controlling of sugars, starches, lipids, and proteins. Insulin helps regulate the body’s functioning cells, including their growth, which is important due to glucose being used as energy.
Insulin resistance is when the body’s cells become resistance to the effects of insulin. Due to this, high levels of insulin are needed in order for the insulin to have its proper effects. The pancreas overcompensates by trying to produce more insulin, until it can no longer produce a sufficient amount for the body’s demands, which results in blood sugar rising. Insulin resistance is often considered pre-pre diabetes due to it being a risk factor for the development of diabetes, along with other health concerns such as heart disease. Insulin resistance is associated with other medical conditions including fatty liver, acanthosis nigricans, and skin tags.
What is Hirsutism?
Hirsutism (HUR-soot-iz-um) is a condition of male-type pattern hair growth on areas of the female body such as face, chest, abdomen, and back. The hair is different from the type some women have on their upper lip, breasts, or chin, which is often fine, “baby” like hairs. which is common. Women with hirsutism have dark, thick, and often coarse hair in male-type patterns. The condition is hereditary, although it is typically caused by high levels of male hormones, or can be caused by conditions such as PCOS, or Cushing’s syndrome. It can also be caused by hair follicles being overly sensitive to male hormones, however doctors do not know the cause. Medication can be prescribed to help lessen the hair growth.
What is Acanthosis Nigricans?
Acanthosis nigricans (ay-can-THO-sis NYG-ruh-cans) is a skin condition that causes areas of skin to become dark, thick, and velvety in areas of the skin that fold and crease, such as neck, armpits, and groin. It typically occurs in people who are obese, have insulin resistance, or diabetes. Treatment for the condition requires treating the underlying conditioners that affect the skins color and texture. Prescription creams and ointments can be prescribed to lighten the skin, antibiotics to reduce odor or discomfort, or retinoids to clear skin are treatment options aside from weight loss, and treating underlying health conditions.
PCOS Risks and Facts
PCOS affects 5% to 10% of women, making it the most common endocrine disorder in women of childbearing age.
Insulin resistance is not a part of the diagnostic criteria for PCOS, although between 50-70% with PCOS have insulin resistance.
Women with PCOS are at 4 to 7 times higher risk of heart disease compared to women of the same age without the syndrome.
Due to higher levels of testosterone, those with PCOS can build muscle easier than those without.
Ovarian cysts are more commonly a result of the hormonal imbalance, and not the cause of the syndrome.
A percentage of people with PCOS also have endometriosis.
Fish oil is beneficial for all aspects of PCOS, from improving moods to quality of skin and hair.
The diagnostic criteria states that a patient has PCOS if they have at least 2 of the following 3 criteria: androgen excess, irregular/absent menstrual cycles, and/or ovarian cysts.
It is estimated that 4 billion dollars is spent annually in the United States to identify and manage PCOS.
What are Reliable PCOS Resources?
The PCOS Nutrition Center
PCOS Foundation
PCOS Diva
Soul Cysters
PCOS Challenge
PCOS Network
The Hormone Foundation
Polycystic Ovarian Syndrome Association
PCOS Diet Support
Androgen Excess and PCOS Society
If you would like a printable pamphlet on polycystic ovarian syndrome, PCOS Foundation has one that you can find here, and print out to offer to family and friends. The PCOS Foundation also offers volunteer opportunities, if you’re interested, you can read more information here.
Due to the fact that PCOS is of unknown etiology, and currently there is a lot unknown about the syndrome despite the annual national health care cost associated with PCOS being around $1.16 billion in 2010. Keep in mind, that does not mean you cannot take steps to control symptoms, and take precaution to prevent health risks from occurring if left untreated. It affects 1 in 10, and around 5 - 7 million of the female population with numbers rising as people announce their diagnosis’ daily.
Please make yourself aware of all PCOS symptoms, gather all the knowledge that is available from reliable sources, and raise your voice. Speak out, if you have a family or friend that expresses concern about symptoms that are similar to PCOS, let them know. While PCOS is manageable, it is vital to get diagnosed, and treated properly with medical care.
After you are diagnosed, make sure you have regular follow-ups with your health care provider, take medications prescribed to you to lessen your risks, and manage your symptoms. Due to the fact people with PCOS are at a higher risk of other health conditions, please keep your health a top priority. If you cannot afford insurance or care for any reason, please check outHRSA or NeedyMedsto find free/low-cost/sliding-scale clinics around your area.
Still in the process of receiving disability accommodations for this fall at my uni- the people in the housing department are being beyond helpful, and by tomorrow I’ll finish having the medical documentation.
I’m so relieved- this will make my life and transition to university so much safer and smoother. The main accommodation is that I will have my own room- possibly my own apartment. I don’t care if I live with someone else, but after everything is submitted I should be able to get a room to myself.
In short, my doctors and I agreed this would be best mostly because of my physical disabilities. The mental disabilities do give me a need for privacy and to be able to shut myself away when I’m overwhelmed, but more than anything it’s for the narcolepsy and chronic pain.
On a given night, I have a hard time falling asleep. I toss and turn, and wake up approximately ten times every night. Obviously that would be so disruptive to a roommate- not to mention that I have to sleep with the lights on or a lamp on to discourage sleep paralysis and hallucinations. As for chronic pain, when I get a migraine I need quiet and darkness- having my own room would give me that space to rest and take care of myself. Basically I’m so relieved that this is an option, and I hope everything checks out okay.
Honestly I’ve only been cleaning and sorting for 40 minutes but I’m already so tired; my head and my back ache. I want to lie down but if I don’t get stuff done today my mom will be angry with me.
Y’all should consider following thatdisabledfeel! It’s a place for physically disabled people to vent, have a good laugh at the things able-bodied people say to us, or just share your feelings about your experience.
NOTE: This blog is specifically for physically disabled people. If you are mentally disabled/ill with no physical disability, it is the admin’s request that you do not follow or reblog. There are blogs specifically for mental illness/disability. Able-bodied people especially should not follow or reblog, by request of the admin.
**people can reblog this signal boost regardless of ability/disability!