The pain inside me I can’t explain. The balm I use to ease my suffering has been watered down. When my tears fall I hear “Jesus Christ!” and “God damn it!” from the chair next to me. I feel shamed, chastised and worthless. Why can’t it be recognized? Why can’t anyone say “We hear you, we know it’s tough right now and you’re scared but we love you.” I get sworn at or hung up on instead. Is it that difficult? Am I that difficult? If they dislike me that much I really don’t want to know.
I have had people ask me recently how I didn’t realize I was sick. I was starting to get frustrated with the questions. The problem is I NEVER feel well. I haven’t for years. It becomes hard to differentiate what’s normal and what isn’t. I was sick of being poked and prodded all the time. I’ve had back pain since I was about 16. I got used to it. When a doctor asks about it it’s hard for me to explain because I’ve lived with it for so long.
So many of my symptoms crossover into each illness. Side effects from meds can be the same as Celiac. Celiac is linked to depression and stuttering. Conversion Disorder for me causes stuttering and tremors. Kidney problems have been associated with Celiac and some medications. My cognitive function has been linked to Bipolar, Celiac, and medications.
Being blamed for not knowing how ill I am makes me feel more alone and depressed. When I think back maybe there were signs I should’ve noticed. I didn’t. I had been glutened by accident. When this happens it can cause constipation or the opposite, fatigue, headaches, pain in my abdomen or gallbladder, an entire 2 page list of symptoms. It also takes months to recover. So that’s why I didn’t really notice anything until my feet swelled 4 times their size.
Now I have to have a biopsy of my urethral wall. It’s risky. The doctor doing it is the best and even he is concerned about the risk. They have one chance to get a piece of the area they need. The area is a small place to work in so if he doesn’t get it right I have to have a different kind of biopsy. The other problem is if he causes a “stricture” because then they have to rebuild the ureter and replace it causing more kidney damage.
None of this sounds good to me. But 4 doctors agree I need the biopsy because they are stumped. They don’t want me to go into kidney failure again.
I’m scared. It’s a lot of anesthesia. A lot of stress. Medicare is giving me a hard time so I’m worried about money. My Bipolar meds are not working to their full potential, leaving me a mess.
I know I am venting but there is no one to talk to. I have to get it out of my head or it will spin out of control.
I love art. I love to take pictures and make jewelry. The art I like isn’t for everyone, neither are my pictures. I like cemetery sculptures. Some people find it disrespectful or odd. I find beauty and wonder in them. Some of the art I like is from a time period where Heaven and Hell was a big theme. Some of it is fascinating and unusually dark for the time period. Sometimes I like a piece because it just speaks to me. I love my jewelry and wish I could sell it. But it’s a hard market to get into even when you know what you’re doing. The stress right now would not be helpful. But I can still enjoy it. Here’s some examples of what I like.The Strength Lion one is my favorite. I hope the Lion that was needlessly killed is at peace. As for the Hunter, may a thousand of my bees find you and sting you in places you never knew you had.
I don’t usually discuss things or give too many opinions on anything involving the government or politics. When it comes to Human Trafficking, Poaching and the Endangered Species List I tend to get upset. These subjects have meaning to me. So while watching the news today I saw at the bottom of the screen something that really got me riled.
From the U.S. State Department:
Approximately 80% of Trafficking involves sexual exploitation, and 19% involves labor exploitation.
There are 20 to 30 Million slaves in the World today.
The average age a child enters the sex trade in the U.S. is 12 to 14.
California harbors 3 of the FBI’s 13 highest child sex trafficking areas in the Nation: Los Angeles, San Francisco, and San Diego.
The National Human Trafficking Hotline receives more calls from Texas than any other state in the U.S. 15% of those calls are from the Dallas Fort Worth area.
Trafficking is the 3rd largest International Crime Industry behind illegal drugs and guns. It reportedly makes a profit of $32 BILLION/YEAR. This is why it’s hard to stop.
The U.S. has a list of places they will not trade with because of it’s history with human trafficking. The list has several Tiers. If a country is on Tier 1 or 2 in means they are trying to do something about the problem. The lower Tiers are considered the worst and we can not trade with them.
Malaysia was on the lowest Tier. It was “fast tracked” to a higher Tier allowing the U.S. to go ahead with a free trade deal with Southeast Asia and 11 other countries.
As The President was negotiating authority for his trade deal Malaysian police uncovered 139 graves in jungle camps used by Traffickers.
On June 29th they fast tracked and pushed ahead on the deal.
Phil Robertson, deputy director of Human Rights Watch’s Asia division said he was “stunned” by the upgrade. He didn’t think Malaysia had done enough to fight Trafficking in any way.
Malaysia was on the same Tier as Thailand, known as a vacation spot for it’s child prostitution/Trafficking, Adult prostitution/Trafficking.
The President of the United States “fast tracked” for trade, a place known for Human Trafficking mostly children, where they have found mass graves of said victims when they are no longer useful.
What do we need from them that is worth the lives of women and children forced into sexual slavery?
When you figure it out let me know.
When I go to my Pharmacy I am under the impression that the medications I am getting will not cause me harm. I expect some side effects that my Doctor has warned me about but nothing beyond that. I didn’t expect to see the FDA admit they can’t regulate Generic Medications adequately.
A Generic Medication must deliver the same amount of active ingredients into a patients bloodstream in the same amount of time as the Brand Name drug. Even with guidelines problems are not detected until after a drug is approved. The FDA admits concerns about Extended Release generics and their lack of therapeutic effect. They are “evaluating the issue”.
Irish company Mallinckrodt confirmed that it’s generic version of Concerta was suspected by the FDA to “Not be equivalent to Concerta”. They reclassified it and it’s still on the market. Mallinckrodt could be pressed to “voluntarily” withdraw the medication but that’s it.
The reason I’m going over this is because I take several Generics. One is Amphetamine Salts 30mg. Generic for Adderall. I was getting the brand Teva which was fine. At one point I was switched to another brand and noticed a difference right away. CVS was kind enough to switch them for me. I have Celiac Disease and some generics use gluten as a binder/filler. They won’t admit it but they do. I can’t afford to get glutened right now with my kidneys in danger and other health problems.
This last time I had my prescription filled I didn’t even think to look or say anything because there is a note on my file that I only do well with Teva. I get home and open the bag and see that they are different. The company is Aurobindo Pharma a company in India that has already had several sanctions from the FDA and thousands of complaints from patients. FDA has done nothing. CVS is only dealing with them now. I took them because I really didn’t have a choice. I was right. I’m more depressed, I don’t want to go anywhere, I feel the exact opposite of when I was taking the Teva. My crying and stuttering has increased to the point where I can’t talk to anyone until around 3:00 p.m. It’s horrible. The 29th I go back to the Urologist. I really do not want to be a mess in front of him again. He’s going to be going over some difficult stuff and I have to be able to handle it. He’ll be scheduling my biopsy and going over the procedure which is risky. I can’t fall apart. He already thinks I’m unstable and annoying. Hopefully my sister being there will help.
This is what the drug companies and the FDA don’t understand. If just one of my medications is off it effects everything. If there is gluten in one of them it effects my entire body and brain. As an example I now have Vitamin D resistant Rickets. Who the hell gets Rickets anymore? But because of the Celiac and my immune system I’m at risk for all sorts of odd things. Gluten is in the most unexpected places. It is irresponsible to not let a consumer know that their medication contains something harmful to them because it’s cheaper for the company to make.
I don’t see things changing anytime soon. It will take time. If consumers keep complaining and stand up for their rights maybe something will be done.
I would like to thank CNN, FOX News, MSNBC, and all news Networks that continue to perpetuate the false information or stigma of the Mentally Ill. BRAVO!! Continuing to label people that do these awful things as “Bipolar” and “Mentally Ill” without knowing a true diagnosis is egregious to say the least. It is horrible for the families of the victims and made worse by creating hate.
The doctors I have been to all agree that my Bipolar Disorder probably started at an early age. I would guess around 12. When anyone asks about being Bipolar I try to inform them as best as I can without scaring them away. If I told them the truth I’m afraid they wouldn’t want to talk to me anymore. But since not a lot of people talk to me anyway I have decided to tell it like it is for me.
I am on medications. I take 3 different meds. I drank heavily for 20 years and have been sober for 6 years. I have trouble socializing. For most of my life I have felt like an outsider. Standing outside a window watching everyone else live. I get an ache inside of me that is almost unbearable. It’s like a gaping hole in my chest that nothing can fill. I feel this way often. I have to go into the bathroom and curl up on the floor with a towel to muffle my sobs. Sometimes it’s so bad I make myself sick. My head hurts most of the time. There is always something in there telling me I’m not enough. I’m a burden, too negative, no one cares, I am invisible.
I often think of leaving this world. I don’t want to die but I don’t want to be here either. No one really hears me when I talk. My family says all I do is talk about my illnesses. If they took them seriously and actually listened instead of telling me what they think I should do maybe I wouldn’t talk so much about them. They don’t know the things I have done and seen or the things that were done and said to me. These things stay with me always. Some were traumatic enough to cause Conversion Disorder. A true case of Conversion Disorder confirmed by 2 experts because a true case is actually rarer than you think. They don’t understand how difficult it is for me when the stuttering starts. They shut me down and won’t let me talk.
Most days I wake up crying and it doesn’t get better until the afternoon. Everyday it gets harder. I run out of things that make me calm or give me a little happiness. I spend most days alone. I am told to make friends. It’s not that easy for me. I can barely get dressed most days. To hear a simple “I love you the way you are we’ll get through this” would help. Maybe. It isn’t easy knowing that people find you annoying and avoid you. So I don’t risk it anymore. This is the truth.