Hello my dear readers.
I am truly sorry for my absence lately. There has been a lot going on in my world. Lifewithchiari.com has partnered with Bearable Bears to help bring a little stuffed happiness into children’s lives all over the world. I encourage you to stop by their page and sponsor a child if possible. There are a lot of little ones out there who need our help!
As for my lateness in posting…
I have been struggling with getting my pain under control. It is hard for someone who doesn’t live with a chronic/degenerative condition to understand what it is like to live in horrible, crippling pain everyday. This is a great article to help understand what its like. Everywhere you turn, people think you are faking, seeking sympathy or attention, your a drug addict, lazy ect. The crazy part is, if I actually WAS a drug addict, I would have no problem getting the help I need.
There is such a stigma attached to people who live with pain as as daily fact of life. (or with any “invisible illness” for that matter.) We even get judged by the people that should be helping us the most. The medical community. I have struggled with ignorance and outright meanness from doctors and others in the medical community. That isn’t to say all doctors are that way, but there is such a need for education, and for us as a chronic pain community to stand up for ourselves. Who knows us better than us?
On that note, most of you know my struggle with pain management. I saw a new doctor today who is starting me on four new medications: Nucynta, Celebrex, Neurontin, and Zanaflex. The doctor didn’t know about my conditions, but he was more than willing to listen to me, and said he is going to do everything he can to help me. I will also be starting aquatherapy, so I will keep you all updated on how that goes!
Also, we have teamed up with Chiari Gear to make Life With Chiari t-shirts! All proceeds from the t-shirt sales will go to Chiari Malformation awareness and research. So be on the look out for those with in the coming months!
Much love readers!
Before I get started on today’s post, I need to give a shout out to a very dear friend of mine. This person, who wishes to remain anonymous, gifted me with the software I need to be able to keep blogging and connecting with you dear readers! As many of you know, I am going blind, and it has become far too hard for me to write posts and reply to emails. I was so worried that I wouldn’t be able to help people anymore, and out of the blue, my dear friend made sure that I can still write, reach out, and advocate for you dear readers! I am extremely humbled by such a generous donation to my cause. Always remember, there ARE good people in the world who only want the best for others!
I hope you have been following my journey on the Chronic Illness Series. You can read my other posts here and here. For those of you new to my blog, welcome! I am glad you are here 🙂 If you have any questions, I am always available. You can find me on twitter or facebook.
Today’s post is one that has touched a lot of us in the Chiari, thyroid and diabetic community. (I don’t have diabetes, but gastroparesis, or GP, is seen often in diabetics.) GP is usually one of two types, idiopathic, (no known cause) or due to damage to the vagus nerve. More often than not, GP is idiopathic unless there is a known nerve damage issue. Many of us with Chiari also have severe nerve damage from years of having our brain stem compressed. GP is considered rare, with fewer than 200,00 cases per year. Naturally, there is no cure, but diet and medication can help milder cases. People can and do die from this disease. There have been cases of patients needing feeding tubes, bypass, or having their stomach removed all together. I know your going to ask, it IS possible to live without a stomach. A feeding tube is inserted straight into the intestines, called a Jejunostomy feeding tube.
So what exactly is GP?
Gastroparesis, literally translated, means “stomach paralysis”. GP is a digestive disorder in which the motility of the stomach is either abnormal or absent. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush food and then propel the food into the small intestine where further digestion and absorption of nutrients occurs. With GP, the stomach is unable to contract normally, and cannot crush food nor propel food into the small intestine properly. Normal digestion may not occur and can cause a build up of food in the stomach.
What are the symptoms of GP?
Symptoms of GP include bloating, nausea, early fullness while eating meals, heartburn, epigastric pain, stomach pain, and appetite loss. Ingestion of solid foods, high fiber foods such as raw fruits and vegetables, fatty foods or drinks, carbonation, nuts, seeds, coffee, caffeine, peppermint and many other foods may cause symptoms. The most common symptoms are feeling full quickly, nausea, vomiting and pain. A person with gastroparesis may vomit undigested food many hours after their last meal. Weight loss occurs often due to not being able to eat or keep food down. Patients are often afraid to eat any kind of solid food for fear of pain and vomiting.
What are the complications of living with GP?
Some of the complications associated with GP include dehydration, malnutrition, malabsorption, undigested food that remains in the stomach hardens and turns in to a bezoar, and an overall decreased quality of life. GP often comes in flares. One day your fine, the next your can’t eat, your throwing up, and so dehydrated you end up in the hospital! If you think you might have GP, contact a Gastroenterologist. It would be a very good idea to start keeping a food log, and write down the foods that cause you problems.
What foods should I avoid if I have GP?
First and foremost, if you have been diagnosed with GP, see a nutritionist. Even if your insurance doesn’t cover one, appointments usually include a free consult. They can help you get the most nutrition out of the foods you CAN eat. Unfortunatly, GP is different for everyone. While one person can handle rice, rice might be on someone else’s avoid list! There is a general list that most GPer’s adhere to, but as always, do what is best for you. Some GPer’s find an elimination diet helpful to rule out what foods give them the most trouble. Here is a good resource from my personal gasto doctor, Dr. Jackson. This is also a great resource if you have questions about testing and possible medications.
It may seem that I am falling apart from my posts, and maybe I am, but I hope that my Chronic Illness Series is of some help to you dear readers. I am starting to feel a little bit like a walking WebMD! 🙂
So while I can no longer enjoy the foodie life I once had, I do still enjoy going out with friends to new restaurants, writing and developing new recipes, and baking my heart out!
Thank you for reading, and be on the look out for the next post in the Chronic Illness Series, Chronic Pain.
Hello Everyone and welcome to the second installment of my Chronic Illness Series. If you missed the first post, you can read it here.
Poly-cystic Ovarian Disease, or PCOS for short, is probably something you may have heard of if your a female between the ages of 16-25. This is a condition I have struggled with since age 12. It has also been the most emotionally debilitating disease I have had to deal with. Most of you know I don’t have children. This disease is one of the reasons. I don’t ovulate because my ovaries have been destroyed over the years with multiple huge cysts. Some of you also know I was scheduled to have a hysterectomy last month, but I couldn’t go through with it. I don’t know as a woman you can ever be ready to lose something so innate to our central being. Even though I have had this condition for the better part of my life, I didn’t KNOW I had it until my husband and I wanted to have children. I was so completely heartbroken, I actually told my husband to leave me so he could have a chance with someone who could give him children. This is NOT an unusual feeling. When you find out your infertile, a lot of women have the same reaction, and that is perfectly normal.
I will get to explaining the disease itself, but I want others to understand how emotional it is to go through the roller coaster of infertility. I still cry every time I hear one of my friends or family members is pregnant. It’s like being stabbed over and over. I want so badly to be happy for them, but at the same time, all I can do is think that I will never get to experience being pregnant, giving birth, and going through all that comes with being a mother. Then there are all of the well meaning people out there who ask, “Why don’t you have kids yet? Look how long you have been married.” Or, “Well you can just adopt.” It’s hard to explain my situation, and it’s hard to have to explain why we aren’t able to adopt. Not that any of this is any one’s business, but I know I am not the only one going through this.
What is polycystic ovary syndrome (PCOS)?
PCOS is a health problem that can affect a woman’s:
- Menstrual cycle
- Ability to have children
- Blood vessels
With PCOS, women typically have:
- High levels of testosterone.
- Missed or irregular periods
- Many small cysts (fluid-filled sacs) in or on their ovaries
How many women have PCOS?
- Between 1 in 10 and 1 in 20 women of childbearing age have PCOS. As many as 5 million women in the United States may be affected, and usually starts with the first period.
What causes PCOS?
The cause of PCOS is unknown. Most experts think that several factors, including genetics, could play a role. Women with PCOS are more likely to have a mother or sister with PCOS. A main underlying problem with PCOS is a hormonal imbalance. In women with PCOS, the ovaries make more androgens than normal. Androgens are male hormones that females also make. High levels of these hormones affect the development and release of eggs during ovulation. Researchers also think insulin may be linked to PCOS. Many women with PCOS have too much insulin in their bodies because they have problems using it. Excess insulin can increase production of androgens which can lead to:
- Excessive hair growth
- Weight gain
- Problems with ovulation
What are the symptoms of PCOS?
The symptoms of PCOS can vary from woman to woman. Some of the symptoms of PCOS include:
- Infertility due to not ovulating. (PCOS is the most common cause of female infertility.)
- Infrequent, absent, and/or irregular menstrual periods
- Hirsutism- increased hair growth on the face, chest, stomach, back, thumbs, or toes
- Cysts on the ovaries
- Acne, oily skin, or dandruff
- Weight gain or obesity
- Male-pattern baldness or thinning hair
- Patches of skin on the neck, arms, breasts, or thighs that are thick and dark brown or black
- Skin tags
- Pelvic pain
- Anxiety and depression
- Sleep apnea
Why do women with PCOS have trouble with their menstrual cycle and fertility?
The ovaries, where a woman’s eggs are produced, have tiny fluid-filled sacs called follicles or cysts. As the egg grows, the follicle builds up fluid. When the egg matures, the follicle breaks open, the egg is released, and the egg travels through the fallopian tube to the uterus for fertilization. This is called ovulation.
In women with PCOS, the ovary doesn’t make all of the hormones it needs for an egg to fully mature. The follicles may start to grow and build up fluid but ovulation does not occur. Instead, some follicles may remain as cysts. For these reasons, ovulation does not occur and the hormone progesterone is not made. Without progesterone, a woman’s menstrual cycle is irregular or absent. Plus, the ovaries make male hormones, which also prevent ovulation.
Normal ovary and poly-cystic ovary
Does PCOS change at menopause?
Yes and no. PCOS affects many systems in the body. So, many symptoms may persist even though ovarian function and hormone levels change as a woman nears menopause. For instance, excessive hair growth continues, and male-pattern baldness or thinning hair gets worse after menopause. Also, the risks of complications from PCOS, such as heart attack, stroke, and diabetes, increase as a woman gets older.
How do I know if I have PCOS?
There is no single test to diagnose PCOS. Your doctor will take the following steps to find out if you have PCOS or if something else is causing your symptoms. If you have PCOS, you will likely see an endocrinologist to help manage your hormones and insulin.
- Medical history – They will ask about your menstrual periods, weight changes, and other symptoms.
- Physical exam – They will want to measure your blood pressure, BMI and waist size. They will check for areas of increased hair growth and for dark skin patches.
- Pelvic exam – They want to check to see if your ovaries are enlarged or swollen.
- Blood tests – To check hormone and glucose levels in your blood.
- Vaginal ultrasound – They performed to examine your ovaries for cysts and check the endometrium. This lining may become thicker if your periods are not regular.
How is PCOS treated?
Because there is no cure for PCOS, it needs to be managed to prevent problems. Treatments are based on your symptoms, whether or not you want to become pregnant, and lowering your chances of getting heart disease and diabetes. Many women will need a combination of treatments to meet these goals.
Some treatments for PCOS include:
Lifestyle modification – Many women with PCOS are overweight or obese. You can help manage your PCOS by eating healthy and exercising to keep your weight at a healthy level. This will help to lower blood glucose levels, improve the body’s use of insulin, and normalize hormone levels in your body. However, it is very difficult with women who have PCOS to lose weight.
Birth control pills :
For women who don’t want to get pregnant they can control menstrual cycles, reduce male hormone levels, and help to clear acne. ( I wanted to get pregnant, so I was put on Spironolactone to control my male hormones) Keep in mind that the menstrual cycle will become abnormal again if the pill is stopped.
The metformin is used to treat type 2 diabetes. It has also been found to help with PCOS symptoms, though it isn’t approved by FDA for this use. Metformin affects the way insulin controls blood glucose and lowers testosterone production. It slows the growth of abnormal hair and, after a few months of use, may help ovulation to return. Recent research has shown metformin to have other positive effects, such as decreased body mass and improved cholesterol levels. Metformin will not cause a person to become diabetic. Metformin isn’t a miarcale drug. (It did nothing for me)
Lack of ovulation is usually the reason for fertility problems in women with PCOS. Several medications that stimulate ovulation can help women with PCOS become pregnant.
“Ovarian drilling” is a surgery that may increase the chance of ovulation. It’s sometimes used when a woman does not respond to fertility medicines. The doctor makes a very small cut above or below the navel and inserts a small tool that acts like a telescope into the abdomen. The doctor then punctures the ovary with a small needle carrying an electric current to destroy a small portion of the ovary. This procedure carries a risk of developing scar tissue on the ovary. This surgery can lower male hormone levels and help with ovulation. But, these effects may only last a few months.
Medication for hormones:
Medicines called anti-androgens may reduce hair growth and clear acne. Spironolactone has been shown to reduce the impact of male hormones on hair growth in women. Finasteride, a medicine taken by men for hair loss, has the same effect. Anti-androgens are often combined with birth control pills. These medications should not be taken if you are trying to become pregnant.
How does PCOS affect a woman while pregnant?
Women with PCOS appear to have higher rates of:
- Gestational diabetes
- Pregnancy-induced high blood pressure
- Premature delivery
Babies born to women with PCOS have a higher risk of spending time in a neonatal intensive care unit or of dying before, during, or shortly after birth. Researchers are studying whether the diabetes medicine metformin can prevent or reduce the chances of having problems while pregnant.
Does PCOS put women at risk for other health problems?
Women with PCOS have greater chances of developing several serious health conditions, including life-threatening diseases. Recent studies found that:
- More than 50 percent of women with PCOS will have diabetes or pre-diabetes before the age of 40.
- The risk of heart attack is 4 to 7 times higher in women with PCOS
- Women with PCOS are at greater risk of having high blood pressure.
- Women with PCOS have high levels of LDL (bad) cholesterol and low levels of HDL (good) cholesterol.
- Women with PCOS can develop sleep apnea.
- Women with PCOS may also develop anxiety and depression.
- Women with PCOS are also at risk for endometrial cancer. Irregular menstrual periods and the lack of ovulation cause women to produce the hormone estrogen, but not the hormone progesterone. Progesterone causes the endometrium to shed each month as a menstrual period. Without progesterone, the endometrium becomes thick, which can cause heavy or irregular bleeding. Over time, this can lead to endometrial hyperplasia, when the lining grows too much, and cancer. (This is why I need a hysterectomy)
I have PCOS. What can I do to prevent complications?
If you have PCOS, get your symptoms under control as soon as possible to help reduce your chances of having complications. Talk to your doctor about treating all your symptoms, rather than focusing on just one aspect of your PCOS. Also, talk to your doctor about getting tested for diabetes regularly.
How can I cope with the emotional effects of PCOS?
Having PCOS can be difficult. You may feel:
- Embarrassed by your appearance
- Worried about being able to get pregnant
You can look for support groups in your area or online to help you deal with the emotional effects of PCOS. Discuss with your doctor about the use of anti-depressants or anxiety medications. You are not alone. You may feel overwhelmed, exhausted and ready to give up, but there is always someone here for you. Over all, do NOT be embarrassed to talk to your doctor about what you are going through. They can’t help you if they don’t know what is going on.
Stay positive dear readers! Look for the next installment of the Chronic Illness series, Gastroparesis.