DO YOU HAVE TO TALK ABOUT IT ALL THE TIME?

I admit that I talk about my Mental and Physical Health often. I should probably say that I complain them often. If you have experienced what I have you might do the same. I don’t know.

I do know I take 3 pills in the morning and 4 pills at night for Bipolar Disorder/Conversion Disorder/Anxiety and I’m back to where I started when I was first diagnosed. No one can tell me why.

My kidney function is slowly getting worse. No one can tell me why.

No one can tell me if I am actually getting any of the benefits from my medications or if my kidney function is playing a part in the medications not working.

I now have continuous pain on my right side that feels like a hot sword being plunged through my back into the bottom of my ribs. No one knows why.

I have zero energy to brush my hair or get dressed. The thought of leaving the house frightens me more each day. If I bend my head below a certain level, then lift it, my heart races, I hear blood rushing in my ears and I lose my balance. I have fallen several times. No answers for this either except I have low blood pressure, a low heart rate, and no vitamin D. Supposedly there isn’t anything they can do. The only way for me get vitamin D is to have a procedure similar to chemo because it’s actually Vitamin D resistant Rickets which is an entire different problem. My white blood cell count is already low so they don’t want to do it. I have no clue.

If you had this many problems going on that no one could give you answers to wouldn’t you talk about it to your family? I don’t want them to fix me or give me the answers, I want them to try to understand what one day is like for me. It’s frustrating to feel depressed and sick every single day and have the people you love think that you want to be depressed and sick.

My best friend said to me the other day “D, I normally would never say this but you were happier when you were drinking and that isn’t saying much. But at least you left the house, talked to people, and laughed. I haven’t heard you laugh in about a year.” She was crying at the end. So was I.

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CELIAC DISEASE (What You Think You Know But Don’t)

Celiac Disease is often misunderstood, even in the Medical Community. It’s difficult trying to explain to someone who should know why you can’t take a specific medication. The Pharmaceutical companies are regulated by the FDA and are supposed to disclose if they use Gluten as a binder in their medication. This isn’t a perfect world and not everyone will tell the truth. Generics are not under the same guidelines as Brand Name medications and are not monitored as closely by the FDA. These are facts.

CELIAC DISEASE

Celiac is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage of the small intestine. When your small intestine is damaged nutrients can’t be absorbed.

Celiac has been linked to various other autoimmune disorders and cancers.

To get a true diagnosis you should have blood test first and then a biopsy. The biopsy is crucial.

A LONG LIST OF SYMPTOMS~ WHAT I HAVE WILL BE IN ITALICS

  • Bad breath
  • Gum Disease
  • Mouth Sores
  • Swollen/Bleeding Gums
  • Erosion of Tooth Enamel
  • Early Menopause
  • Swings in Hormone Levels
  • Heavy Painful Periods
  • Infertility
  • Swollen bladder/cervix
  • Acid Reflux
  • Bloating
  • Constipation
  • Diarrhea
  • Nausea
  • Loss of Appetite
  • Stomach Pain
  • Ataxia
  • Back Pain
  • Joint Pain/Stiffness/Swelling
  • Leg Cramps
  • Anemia
  • Deficient in Vitamin D
  • ADD
  • Anxiety
  • Brain Fog
  • Memory Loss
  • Asthma
  • Brittle Nails
  • Bruising
  • Dark circles under the eyes
  • Pale skin
  • Burning scalp
  • Dandruff
  • Eczema
  • Bladder Infections
  • Blurred Vision
  • Chills/Fever
  • Chronic Fatigue
  • Vertigo
  • Hair Loss
  • Headaches
  • Hypothyroidism
  • Seizures
  • Sinus Pressure
  • Irregular Heartbeat

Celiac can also cause you to have a low white blood cell count, arthritis and osteoporosis.

When you’ve been diagnosed with many other disorders/diseases and there’s an overlap of symptoms it’s extremely hard to know what’s causing what.

My twin also has Celiac and despite being Gluten Free like I am still suffers the symptoms. This happens to some people and it’s called Refractory Sprue. When this happens your chances of different types of cancer go up.

It’s difficult being a walking medical mystery. What do you do when no one has answers for you? I know my medications have not been working and have said so for the past year. I’ve asked every doctor if it’s due to Celiac, Kidney Disease, Absorption Problems, and not one can answer me. I get worse every single day. My Dad is sick of hearing about it. My sister is sick of hearing about it and thinks I’m being dramatic and I just want attention. I don’t get attention. I’m ignored. If no one knows the answer they don’t want to deal with me. So I hide in my room and hope it all goes away. The pain is bad in my sides it’s like a hot poker constantly stabbing me in the side up to the bottom rib. This started after my last stent exchange almost like he didn’t hook it on right. I’m not saying a word. I’m done with it.