Tag Archives: Chronic Illness

It’s Been Awhile So Get Ready!

After not really writing for awhile, I started to notice I was becoming more irritable, irrational, quick to anger, isolated and depressed.

I’ve always had a problem with confrontation. I avoid it as much as I can. This has usually meant staying silent when someone hurts me or says/does something I disagree with.

Eventually I will reach a point where I can’t swallow anymore B.S. and I reach a breaking point. Whoever is near me at this time suffers the consequences.

I can physically feel it happening. I hear my blood rushing in my ears, I lose my vision except for the color red or red dots and my head gets incredibly hot.

When it’s over, I don’t remember all of it, only bits and pieces. I know I screamed and yelled, said some horrible things, but I don’t remember the specifics.

I don’t make excuses for myself. I have tried to explain why it happens.

One of the most difficult things is when your loved ones think you aren’t trying hard enough.

When I had my last kidney surgery to change my stents, it was embedded and partially blocked with a build up of mineral and calcium deposits.

Your kidneys filter toxins from your blood and help keep your bodies chemistry in balance.

If you have 1 kidney working at 40% that has been compromised because the stent keeping it working at 40% has become embedded and blocked, your blood isn’t being filtered and your body chemistry is thrown off.

Now imagine you have an illness involving a chemical imbalance in your brain. Plus most of the medications you take go through your kidneys.

This would cause a huge problem if this went on for 6 months without you or your doctor knowing.

So when my stents were finally changed it was like starting over. I felt like I was mentally back where I was at 20 years old. My Psychiatrist didn’t adjust my medications even though he received all the reports. I was basically starting fresh but at high doses. All the medications that had been in my system I had detoxed from. One of the reasons I felt the way I did.

Starting over with all the side effects is horrendous. There have been times I just wanted to get in my car and start driving until I ran out of gas.

My Dad isn’t doing well and I’ve had to worry and take care of him. He has multiple disc herniations and bulges in his back. There’s also a compression at L4 and extreme spinal stenosis and arthritis. When I heard them ask if he knew he had several healed fractions I thought I was going to vomit.

He was too busy bragging about how many pounds of grain he can lift and carry to feed his 300 birds! He told me he got rid of almost all of them. He lied. Then continued to dig the hole deeper by boasting of all the other things he isn’t supposed to be doing.

I can’t chain him to his chair. He turned 75 on June 5th. I called and reminded my sister the night before. She NEVER CALLED HIM. On the 7th I called her and asked if she had called our Dad. She said she was going to. I asked why she didn’t do it on his actual birthday. She replied “He didn’t call me on my Birthday” That’s when the blood started rushing. In the last month she has told me 3 different times that she or her and her husband dislike my behavior and how I don’t take responsibility for anything.

I never see my sister and her husband. Since I had that 1 fight with him 4 or 5 years ago I’ve been kept at a distance. But they still bring up my “behavior”. How do you know what my behavior is when you’re never around me?

Sorry if I’m mad because once again I’m the one taking care of one of our parents and I’ll be the one that gets to watch them get worse and worse. I’ll be the one to either find him dead or watch him die at the hospital while you make excuses from 10 minutes away.

She never called for Father’s Day either.

I can’t watch another parent die.

Watching my mother almost killed me. I can still see her face, the nurses laughing, my Dad howling, the blood, like it’s right in front of me.

I remember her last words to me and that kills me.

I don’t want to do it again. But he never left me. I owe him. I know the rest of my family figures it’s okay because I’m alone and they think I’ll stay that way. Maybe they’re right and I should accept it.

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HAVING AN EXPIRATION DATE

I’ve been past my “suicide” phase for years now. I still think about it on really bad days but not like I used to when I self-medicated with alcohol. When I self-medicated with alcohol I didn’t just think about it. I’ve been sober close to 10 years now.

Seeing the results of my blood work I was scared. I didn’t know my kidneys were getting worse so fast. They use your GFR to determine when you should go on dialysis or go on the list for a kidney transplant. When the number hits 30 your Doctor starts preparing you for your options.

My GFR was a 40 one year ago. I kept putting off going in for surgery to have my ureteral stents changed. Part of the reason was the Depressive Episode I was in for a very long time. The other part was just fear. You know when something is wrong with your body. I knew I was losing weight again but there was some swelling in my feet and ankles. The color of skin is the same as chalk but with dark circles under my eyes. I’ve lost muscle mass specifically in my temples. I didn’t notice how bad until this morning. They are so hollowed out I could collect rain in them. I’ve been a little short of breath and having trouble doing simple tasks.

I’m pretty sure I won’t make it on a transplant list. I checked again today. If you have a mental illness, a past history of drug/alcohol abuse, or an autoimmune disease, you usually have a hard time getting on the list. I have all three. I have twin who could donate her kidney but before I could ask I was told she wouldn’t. She had to think of her children. Pretty sure her husband had a big influence on this decision.

Because no one knows why I went into Kidney Failure, or why my kidneys are getting worse, no one is sure about dialysis. My other option is to have a tube coming out of each side of my back just under my shoulder blades. The tube would drain fluids out of my system and goes down each leg. Someone has to learn how to clean and change the drains which I don’t have anyone to do this.

Before I make any big decisions I’ll go to my appointment on Tuesday and see how much longer I can keep the stents. If they don’t send me to the ER then I’m going on a Road Trip to Deep Ellum, Texas. I don’t care what anyone says. I have limited time to do what I wanted to do. So I’m going to try it. What’s the worse that could happen? lol


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.


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.


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