To Those Who Still Do not Have All the Answers for Their Health Issues
chronic disease getting a diagnosis.
Some may think this sounds…odd. Why would a diagnosis be considered a good thing? How is receiving a diagnosis at all relieving? Isn’t it terrible to know you get a incurable disorder?
No , and yes at precisely the same time.
Let me clarify: years pass from feeling ill with doctors appointments, blood work with no replies and negative effects. It becomes exhausting. Trying and linking. Viewing this doctor and physician. Taking supplements or different medications. Obtaining test after test done. And still, despite all these efforts and time attempting to work out this puzzle, you feel as though you are no closer to replies as possible when you began your quest.
Thus when a physician comes together that finds that this puzzle piece that is missing, it’s a huge relief. It feels as though a giant weight has been raised. Since, yes, you have a chronic illness which waxes and wanes over time, however, at least you know what is wrong. At least it’s possible to take care of the disease to assist your symptoms. At least now you can have that peace of mind knowing that you are not “crazy” or making the whole thing up! Which is a huge fear of mine.
Nonetheless, it’s never that easy. Once 1 doctor figures out it, another physician thinks they have the responses and the other physician isn’t right. The doctors suspect you have that this disease, but the results are back negative. You feel as though you are back to square one.
I felt a huge relief. The unknown of those six months I waited in my muscle contractions were weighing me every instant of every day. Until that day once I discovered the phrases…”We all know why you’re feeling like this, and we can treat it so you begin to feel better.” It was music to my ears! I had a concrete answer and all I went through.
If the treatment methods suggested don’t work, but what happens? You obtain another opinion. What occurs when this opinion questions that the doctor’s diagnosis? OK, you undergo their evaluations. What happens if outcomes conflict, and now, you are no longer positive if the major diagnosis you’ve had for a year is the right one? When the doctors disagree, what happens? What now?
It is a dreadful feeling. It is a dreadful feeling to be to be in the unknown. Particularly after you think you have all the replies! And if you are in this circumstance, I am quite sorry. I know how awful it feels. But do take some comfort in the fact that you are not alone in this stage. In actuality, I think it is common for chronic illness musicians to undergo this during some point of their journey.
This is where we must practice patience. We need to practice approval. We know, and need to focus on being at the here and now all replies come in good time, and at the right time. We’re keen to have all the replies. We’re tired of combating with our health daily and fighting this battle. But if we keep holding on, our responses will come.
Do not stop trying. We can get through this. We can overcome this. Do not underestimate the ability of this disease community; it’s given me strength and hope once I needed it the most. And my expectation for each of you reading this is that as it did me , community can offer you with that same guarantee and fortitude.
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Thinkstock photo via llhedgehogll.
Surviving on Cornstarch: My Life With Glycogen Storage Disease
once in approximately every 100,000 births. This disease is hereditary and due to both the mother and father passing along this mutated gene. They don’t have to have this disorder. When they were to get a child, there’s a person in four chance the child will have the disease.
The major use of a individual’s liver is to make and store gas from the carbs they consume, such as rice and potatoes. Travels were produced by some of the glucose into the bloodstream and the remainder into the body where it’s used for energy.
The liver of a person with GSD type 1 doesn’t execute this function. We’re overlooking the receptor that allows this process to take place.
The deficiency impairs the ability of the liver to produce glucose that is free from glycogen. Since these are both main metabolic processes where the liver provides glucose to the rest of the body during fasting, it causes severe and results in a rise of glycogen in the liver or kidneys leading to enlargement of both.
Frequent feedings of other or cornstarch carbs is the most important treatment. I must take daily to 80 grams of cornflour. I’ve not ever had a complete night’s sleep. Cornstarch contains the maximum amount of carbs (one tablespoon contains nine grams of carbs) and when taken raw it’s difficult for your body to digest, therefore giving me slow discharges of energy.
I go through approximately eight boxes of cornflour weekly and above my life time I’ve consumed roughly 1328 kilograms (~2928 lbs) of this. It is estimated to be about 17 bathtubs to visualize this! How can anyone take this illness seriously when our medicine is a gravy thickener?
The danger of not accepting cornstarch is hypoglycemia. It is the one which is quite damaging and the central issue. Any seizure can lead to severe brain damage or , even worse, death. Possessing chronic low blood sugar may allow you to create tumors in your liver called adenomas, generally getting cancerous if not addressed fast enough.
Having GSD comes with other problems like growth failure, joint problems (gout), kidney problems, pancreatitis, bowel problems, a higher disease risk and blood clotting problems.
Without treatment, growth failure is typical due to chronically low glucose levels. Moderate malabsorption can be caused by involvement. I was diagnosed with Crohn’s disease at age 16 due to battle and the with each the above too.
Neutropenia is a manifestation of the disorder. I have a very low white blood cell count and even though I’m on daily injections to boost my immune system that I still pick up infections and viruses easy. Without sufficient metabolic treatment, patients with GSD type 1 have not made it into maturity, and up till 1971 this disorder was completely deadly.
People who live can be stunted in growth and delayed in puberty because of low glucose levels.
I am now on my hospital admission. I’ve been living here in the clinic for 3 months and I am currently awaiting a liver to save my life.
We need to increase financing and awareness!
Doctors in college don’t get educated about GSD; it receives a mention in death, in the best. Here in New Zealand nothing has been released by any one about the illness and I wish to change that! I wish to raise money to assist their teams and doctors.
I am hoping to write and publish a novel on living with GSD. Every little bit helps. If I could walk right into a hospital and also have the physician or nurse already be aware of my illness, it would blow me away.
I would not wish this illness.
As it’s made me who I am now however I would not alter a thing.
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