A journal of healing

Posts tagged ‘biology’

Being controlled

Kitty

Ever have a dream just before you get up in the morning and know that it is going to stick with you for the rest of the day? I had a doozie this morning. The dream demonstrated my issue of not having control in my life and the reality that we never really do have control. And the best thing any of us can do is to stop fighting that very thing and trust that things will come out ok.

And for the most part of my life, this has been true. But, it does not always seem like it when I am in the clutches of something that has me wrapped so tight that I snap at things and I am not a very peasant person. I do not think there is a being in the world that does well being captured and under the control of something that seems beyond their ability to change.

And that brings me to a situation that I have along with many other people and that is being under the control of having to have a medication in order to survive. It goes hand in hand with having a disease that is inherited or brought on by no fault of the being. There is a lot of that out there. And until you have something like this or know and love someone who is in that situation, it is hard to understand what it does to the person.

I am writing about this because of something that happened recently. I have friend who has MS. She is well controlled most of the time. But she has flares and when she is in the clutches of a flare, she has a tendency to be a bit sharp. Normally, she is bubbly and personable. The last year has been terrible for her and I have seen the decline in her over the last couple of years.  She is on very expensive drugs to help her maintain. She just recently lost her job and it was due to her inability to get the work done and in her inability at times to get along with her team. No one on her team seemed to be able to look past her anger and forgive her for being nasty. She was letting the disease control her and she really needed some help with that anger.

I also do not think people understand the warrior she is. Every day she got up and came to work, even when the pain was so great she would have tears. No understood her humiliation when she had an accident at work because she could not get to the bathroom in time. It became a joke around the “watercooler”. And yet, she would come back to being her funny self when the pain was less and make jokes about her situation. Now, she has no insurance and no income and I pray she will find help.

I realize now why old people sometimes are just very nasty. As the body deteriorates and pain becomes your constant companion, it is very hard to pleasant all the time. Alcohol is a method for many in pain which then leads to alcohol issues. Sometimes, anything will do as long as it takes the pain away.

And this brings me to the point of being controlled because you rely on a drug to survive. We live in an amazing time that there are so many drugs and procedures to keep people going who in past times have died painful deaths. I am grateful for the medicine I have available that twenty years ago did not exist.

But at what cost?  Along with thousands of people, I am in the control of these drugs. I will need them for life. One keeps my blood from clotting. The cost is I can easily bleed to death. The others are for my Psoriatic Arthritis and the side effect possibilities also include a higher probability of death due to cancer. The most recent drug I am on is causing me to gain weight, which is the last thing I need. But it is a side effect and out of my control. The drug I was one before, allowed me to lose weight and the one before that put weight on. This new drug is not doing anything for my psoriasis, and so I am beginning to break out again and it also doing little for the pain in my joints. But it is working on my gut issues. I have to stick with it for at least six months before we try something else. Unless like the last one, I have an emergent issue like an inflated blood pressure or some other reaction. Again, all out of my control.

There are so many debilitating diseases out there and more everyday being diagnosed. It is an amazing world we are in if you can get the medicine you need in order to survive. This brings up the huge topic of insurance which is the king of control. I will never understand how an insurance company can refuse their insured drugs prescribed by a doctor. Who the hell are they to make that decision?  I have often had to wait months for a decision on a drug that my rheumatologist wants me on and all the time there is deterioration going on in my joints. This last time while waiting for my approval, my two toes started to curl up so bad that shoes were becoming a problem.

I am writing about this in hopes that someone will read this and be kinder to someone who is in pain. I am hoping this will help people to see past the nastiness and be patient and understanding. When someone is pain, it is easy to react in hurtful ways without even being aware. But it is not about you. It is like being a captured animal and the cage is pain.

very close kitty

To Boldly go where no man has gone before…….

Potty I had so many titles for this post.  “Which end is up?” “Danger, blast site!” “It’s all water in the end.” All’s well that ends well.”  “Up periscope!”  Can anyone guess what I am prepping for? I have been perseverating about this for about a month.

I have been having some digestive issues…well actually my whole life. It started when I was a kid. My mom’s remedy was horrible and she used it frequently. I think this is one of the reasons I am having such a hard time. It was quite common in the fifties before they had prepared medicine you could get at the store. (If they had them, my mother never used them) Instead it was a humiliating process with hot soapy water. Ghad! Even now I cringe.

I cannot believe I have shared this memory as it had lurked in my head hidden for years. But there it is. I am usually not bothered by tests such as scans, scopes and so forth as I have had several. I was diagnosed about seven years ago with diverticulitis. It is highly probably that it is part of the disease process from my psoriatic arthritis.

About three years ago, I started having real issues. Scary, “I hope I can make it and no one is in the bathroom” moments, that are the nightmare of anyone who has an issue like this. People with IBS and Crohn’s know of what I speak.

When I was a younger woman, it was the fear of a monthly accident.  And I had some horrible moments that including leaving my uterus in a chair in a conference once. I escaped with blood pouring down my legs. “Gee, I hope no one saw.”  Yeah right. I was so prolific that I used carry a drug store of protection with me everywhere along with a change of clothes. Instead of the riding the cotton pony, I would eye ball sheep!

When I had my period medically stopped, it was like a new lease on life. My last period lasted for three months. I was heading for a transfusion when they decided to stop it at first with a shot and then with a procedure. Lucky for me, I went into menopause and never had an issue again with that.

And now, I still am tied to being near a bathroom for a completely different reason. I joked with my friend that we are only changing the need of protection but we came in wearing diapers, went to pads for different reasons and back to diapers, I am sure.

So I am hopeful that the colonoscopy will not discover anything that can’t be easily fixed. I am also hoping to get some help with the digestive issues that are part of the problem.  I am talking about that food comes and goes almost in the same form. I normally eat a high fiber diet: salad, veggies and fruits. Now,  I can eat like that for only so long before I have an issue. Then, the opposite occurs for a while and on it goes in a cycle of on again and then off. Either way, I am in pain much of the time. I am almost used to it.

Like an idiot, I have done research…. It’s what I do. Unfortunately, I have discovered and now it is haunting me that I have every symptom of colon cancer except bleeding, which is fascinating because I am on a blood thinner.  The one that is weird is feeling cold. I never have felt as cold as I have in the past months. It is an internal chill that does not dissipate with warmer clothes or even tea.  The other symptom is losing weight. I have lost about 23 pounds. But I am trying to lose weight. But in all honesty, I am not trying all that hard. And it is coming off.

So I am off from work tomorrow to drink the Kool-Aid, so to speak. I am scheduled early Friday morning for the actual procedure. I took off not only because of the shared bathroom issue, but because I have been a blithering idiot the last two days. Some people know why, but not everyone. I am frightened also that the prep may cause damage. I am actually scared I will have a blowout. And although I am sounding like I am joking, I am not. I won’t sleep much tonight. I just hope everything comes out alright….. literally.

Family that sticks…..

little girl

You can pick your nose. You can pick your seat. But you can’t pick your family. Some people hold that you pick your family prior to coming to earth

When I met my husband his daughter was 12 and going through all the drama and crap that comes with that age. My husband had sole custody of her. Her mother was alive but lived on the other side of the continent. By the time I was on the scene her mother had married a wonderful gentleman. Stepdaughter (SD) went to see them at least twice a year, paid for by them. The whole relationship between all of us was actually quite pleasant and friendly. I actually worked for her mother for a while when I was back in college full time.

After living together, SD and I started to bond. The phone calls to her mother were filled with things we were doing and she often would say things that I had said. This made Mom pretty upset and she started to insert herself in our situation. I would say, “SD, please do this chore” and she would come back with the “You’re not my Mother” crap. She started to lie. She skipped classes. She spent a lot of time in her room. Some of this was just being 15. The rest of it was her mother.

After living with us for almost two years, she decided she wanted to stay with her mother. We were more than fine with it.

It turned out to be exactly what was supposed to happen. Her mother’s husband ended up having a brain tumor and dying. He did everything for those two. And he had money. It was a mess when he died and no one was there to take care of them.

Fast forward to fall last year and ten years after SD had left… We get a call from SD saying her mother was in the hospital and it was not good. She passed away this December. She left SD in a difficult situation. The ties of SD and her father and I were pretty strained. So SD moved back and is living with her mother’s relatives downstate.

This weekend she came here to stay for the weekend only. She is a mess. Her weight, which is a family issue, is very bad. She is in need of serious dental work. She has not seen a doctor in years. She has no direction and an inflated sense of what she is capable of.

Fortunately, she is also independently wealthy….she thinks. This is where it gets messy and it makes me angry.

SD is a 25 year old who has no idea of how to take care of herself. She has never worked a day in her life. Not even babysitting.

She has no idea of her trust fund and how to protect it. A friend of her mother is the executor. Yikes!

SD does not drive.

And she does not take care of herself. She has no health insurance. She could not even keep up with me when we went shopping for a bit yesterday. I am 60 and have PsA.

But as we chatted last night, SD opened up a bit. I had asked her why had her mother died so suddenly and we were not aware of her being so sick. It was not sudden. Her mother, a long time diabetic (II) never took her insulin or even read her BG. It was like this when she was married to my husband over 20 years ago. This transferred to kidney issues and then serious heart problems. Her mother smoked and her idea of walking was to come down three steps from the office in the house (she worked remotely) to the recliner where they ate and watched TV.

As SD sat at our table, she started to cry. She is angry. Her mother expected her to take care of her and yet, never provided her with the knowledge of how. Her mother was told many years ago that she was on a path of an early death. She needed to lose weight and exercise. SD used to fight with her to take better care of herself. Her mother needed to take her meds and she needed to monitor her BG. She did none of it. The progression of deterioration went to her liver. At that point they said she was not a candidate for a liver transplant because she was so non-adherent. There was no DNR, no advanced directive and we had to tell SD how to become the health proxy so she could do what needed to be done. Her liver failed and SD had to make the decision to have the medical apparatus that was keeping her alive removed. I also cannot fathom how that must have made SD feel.

She spoke about how her mother was so impaired that she could not get her out of her chair at night. You could hear the anger in SD’s voice as she spoke of how her mother made no effort to help herself.

And so, of course, SD has no clue at 25 of how to take care of herself. I chastise myself a bit that we let her go out there. Her life would have been very different. But even deeper inside of me is my own anger at her mother. SD has her faults as we all do. She is also a product of her childhood and the lack of parenting. But she was a child. I did have my own children and it is my greatest regret. It was not my choice either. I am angry that her mother did not cherish her life enough to honor this wonderful youngster and allowed this all to happen.

This is a very smart young woman who is a disaster and who is afraid.  SD has an amazing sense of humor and for all that she has been through, she is pretty resilient. I am hoping in time we can get her up and going in a healthy and better way. I think that this might be also incentive for my husband to be a better role model, too. I can only hope.
 

 

 

 

 

 

 

The Wind beneath my ……

open roses

I am connected to a couple of organizations for Psoriasis and Psoriatic Arthritis. I was going through my emails tonight and there was a post that got my dander up…. And if you know anyone with Psoriasis, that is not a pleasant thing. They do not need help getting their dander up.

The article was talking about how there is a connection to the microbiome in our bodies and Psoriatic Arthritis (PsA). What this means is there is good bacterial in and on our bodies that do many things. When your system is sick, and you have a bacterial infection, you have too many of the bad ones. Other symptoms caused by bacteria out of whack are athlete’s feet and yeast infections, the plague of being a woman. Cellulitis is also a common and very prolific bacterial infection.

When people are often diagnosed for skin rashes, they think they are bacterial. Psoriasis is NOT bacterial. It is a reaction to the immune system being out of order and the skin over produces cells which build up plaques. That is what the rash is. I did not present “normally” with plaque but with little raised circular dotted configurations. It was several years before they figured out what my weird head to toe rash was.  (I was diagnosed with the PsA and they then connected the dots…so to speak.) They thought hives, and I was pretty sure that was it too. I have had hives off and on for my whole life. I was put on antibiotics. Guess what…that was the worst thing they could have done.

My immune system went absolutely haywire. I went through a series of strange symptoms that would show up in labs.  I would rush around being given all kinds of tests; all to find an anomaly, but then nothing would be done. I was tested for parathyroid issues, Hasimoto’s thyroid disease, saw all sort of endocrine doctors, saw nephrologists when my one kidney crashed, I became diabetic with an A1C of 13 from my normal 5. But no one could figure this skin thing. I would itch so much at night I would bleed. My sheets looked like I was attacked by a knife.

Finally, they tested for the RA markers and did a SED test. It was definite for PsA. Finally, (slap your head) the rash was figured out to be psoriasis. By that time, I had some hefty plaque on my scalp which confirmed it.

I have always had gut issues. I will try to not be too graphic. In my family, farting was an art. I was a Picasso. (Ok, I have to stop laughing at this) But in seriousness, this “ability” was not something I thought about much. I also have a loud gut. My bowel sounds do not need a stethoscope to be heard. Matter of fact, my dear friend wants to record them and make a record out of it. As I got older, my digestion became pretty erratic. I think it is one cause of my weight issues. Most often what comes in, goes out the same; no digestion. So…(in honor of the good Doc), I no longer practice my “art” for fear of a big oops, especially in public.

This article I was reading tonight shed light on something. The article talked about the gut having missing bacteria could be a factor in people having PsA. http://www.psoriasis.org/advance/features/microbiome-how-your-bacteria-affects-psoriasis-psoriatic-arthritis

I wanted to scream. NO SHIT!  Totally inappropriate, but truthful. I think about how my gut situation has steadily gotten worse over the years. Most times, I have to eat and have access to a facility pretty pronto. I have has some serious miscalculations (yes Doc, you are not alone) I will have a series of days like that and then just the opposite. Being blocked up is more painful I think. But I am 97% of the time in some form of discomfort all the time.

I was diagnosed with diverticulitis and was hospitalized for it five years ago. The course of meds included IV-antibiotics. My reaction was so bad, that they thought I had C-diff. It came back negative. But I was allergic to the Cipro and presented with real hives head to toe. I was also hospitalized with pancreatitis, hospitalized….given pain meds that locked me up tighter than Fort Knox. We had to blast. That was caused by an infected…. INFECTED gallbladder, which was removed and more drugs were given. Anyone catching on here????

So this article goes on about the investigation to the link of inflammation and the bacterial count in our system. It talks about probiotics.  On my GP’s recommendation, I went on probiotics. ONCE! My reaction was the worst case of almost not making it to the potty ever. Talk about a bowel cleansing. Yikes! I was sick as a dog for several days. I obviously stopped them. However, for the past two years, I have suffered from chronic issues that have ramped up to be like having Crohn’s. Last year, the Enbrel I had been on for eight years stopped working. My immune system had become “numb” to its affects. The result is my PsA is in full bloom and my gut is also blossoming and it ain’t pretty. I have days when the pain is so great and the reaction to food is so violent that it is amazing there is a bathroom left. You would think I would lose weight. But no; just the opposite. I put on thirteen pounds since last May. Fortunately, I have now lost 18 being on Weight Watchers. But it is extremely hard. For one thing, my ability to eat raw veggies is absolutely gone. I cannot tolerate carrots at all. Too many luncheons of salad and I am in extreme pain. I love veggies and I do not eat meat. But I cannot eat a lot of other things now. I also feel just terrible, tired, and irritable and gassy…. And not in that order.

But in the article at the end, it explains that the OTC, or everyday currently available probiotics are not the answer to the solving the connection with PsA. I will gladly volunteer to trial a product. The article leaves the possible cure for this terrible disease just hanging. It infuriates me. If they would spend one day with me in a small, warm room with no breeze…..that cure would be on the market pronto.

My mother and Weight Watchers

stone goddesses

I began Weight Watchers in January, 2015. I am strongly letting everyone know that it has nothing to do with being accepted or trying to meet anyone else’s expectations. It is about me getting my Psoriatic Arthritis under control, which it is not. I found out that inflammation changes the hormones and body chemistry making it very difficult to lose weight. In fact, most people gain. And I am like most.

In the last two years, I sat back and watched my weight steadily increase, some of it since last May when I had a horrible incident with a kidney stone that was 6mm big. It threw my chemistry completely off and within a month I had put on 8 pounds. I thought it was fluid, but it kept climbing higher, even after I passed the stone.

I did a lot of research, as I often do when I come up against something. I thought about bariatric surgery and discovered it should be called barbaric surgery. I asked around a lot and found from the mouths of people who had the surgery that it worked at first, but then MANY gained back some, if not all. And then on top of that heartbreak, they all had some form of  new issue such as diarrhea, hair loss, pain, mal-nutrition, anemia and the list went on. This to me was not an option for me because of the other complications with my blood clotting. I scratched it right off the list.

Then I looked into serious weight loss plans. Again, major rebound issues coupled with health problems. One program was good for small weight loss like 20 or so pounds, but very impossible for long term. The diet was 500 calories with multiple supplements. Really? How does that change a life for better?

So I turned back to old Faithful Weight Watchers (WW). This was my third go at it. First time I lost about 30 pounds but rebounded. Last time I gained right off the bat. This time…. well…. First my story. This is triggered by a friend’s blog I read tonight.

My weight issues began when I was very, very young. I do not remember ever not having a weight problem. I was pudgy as baby. I had severe food allergies and then that seem to not be a problem. There is one picture of me around three and I am not fat but I am not thin. I was tall though. A picture of me at five is that of a beach ball. It remains that way the rest of my life. But in truth, there is a picture I found of me standing up and I was around 13 or 14. I was fully developed, taller than any woman in my family and thick. Not fat, not thin. Shapely. I think at that time I was a size 14-16. The same size clothes now would be a 10-12. I had fabulous legs because I rode a bike everywhere and for miles. I walked, skated, swam all the time and danced. I had a bit of a gut compare to others, but I also had a shapely figure. But by then, I learned to hide, so to see a full shot of me was startling. I also realized I was not the beast my family had portrayed.

My mother, sister, aunt and both grandmothers were petite women. No one was over 5’1 and no one was over 120 pounds. In 6th grade, I was 5’5” and 117 pounds and in a DD bra. I was considered an aberration and chastised soundly by everyone. I can remember my aunt telling me to wear a girdle when I was 13.

My mother decided right about then she was going to “fix” me. She put me on this diet of green beans and Jello. I like both, but it was all I was allowed. I bought lunch at school and that was when you did not have choices, just one hot lunch for 25 cents. Our house was filled with candy and cookies. My father made his own root beer. We had store-bought bakery goodies and donuts every Sunday. Dinner was a roast or casserole with white bread, whole milk, fresh butter, and some dessert.  Crème sauces were big and on everything like fish, potatoes, veggies and meat. Veggies were lima beans, corn, peas and potatoes. I did not have a tossed salad until I was 16. Fruit was rare and often a “salad” was a canned pear on a leaf of lettuce with a glob of mayo and a maraschino cherry. Very chic! Very 50’s.

So her solution to my EATING problem was making me eat beans and Jello for a while. Now mind you, when I was younger, if you did not eat your dinner, you were severely punished. As children, we did not eat with the adults until we were older. On holidays we were allowed at the dinner table, but no talking and no messing around. Just eat and shut up.  I learned very early to eat everything. I was the kind of child who hated being scolded in any manner. Still don’t like it.

My mother could out eat us all. Her metabolism was not given to me. My siblings could eat and remained thin until much later in life. Not me. I ate what was on my plate. Rewards were foods like a special Dunkin donut covered in frosting. Birthday meals were fried chicken or lasagna. Candy lurked everywhere, dishes and bowls of the stuff. Fortunately for me, I am not a big fan of most hard candy, but in a pinch. My mother and father had buckets of Fanny Farmers’ assorted chocolates. There was always a full cookie jar on the counter in the kitchen.  Cheap soda was in the refrigerator and the famous root beer was shared on special occasions. Even alcohol was allowed early in life and on special occasions. I learned to love Cherry brandy by the time I was eight

The part as an adult that I have had to work on so very hard is to get my mother’s critical voice and disapproving looks out of my head. She would skew her face up and would look at me with such distain sometimes that it would hurt me to the core. Food was the enemy she deemed and would go on rampages to humiliate me or shame me into “doing something about my weight.”

Dinner often turned into a battlefield, especially if they had been drinking, which….. they did every night. Some nights, it was a race to be done eating to get away before something happened. Common tortures were a heavy knife handle to the elbow for having it on the table. We had these ball shaped salt shakers which my father would swipe up and pelt at you for some perceived misdoing. As time went on, and my siblings left to go to college or their own lives, I was the featured target. My father would take his dinner plate and fling it at the back of your head like a Frisbee. If he was really out of it, he would fling whatever he could reach.

But I always ate my dinner with my head down and quiet until I was around 15. Then I began to cook for myself and eat privately when I could. My parents often never got to dinner or it would be ten o’clock or so. They were so smashed it didn’t matter. My father munched on cheese and crackers and Mom smoked. But by this point in my life, my food issues were tightly engrained and my body was never going to be petite. NEVER. I ended up at 5’ 6’ inches with size 8 feet. (Mom’s were a size 5) My hip bones (pelvic area) were a good five inches wider than hers, and at her  4’9 inches, I towered over her.

But her voice never left me. is I will always see her dark hair framing her disapproving looks.

Fast forward to now, the present moment… well we will back up first. When I started working at my job there was this woman who I saw for the first time from the back and my heart skipped a beat. I swore it was my Mom.  Something about the way she held herself.  This woman and I do not get along. She is critical of everything and everyone. She has a frown on her face most of the time. She especially does not like me. I am in the position she held for ten years as head of Education. She is a nurse, I am not. This is my failing and she and a few others let me know at every opportunity they do not approve of me. It was very hard for me to get passed her and ignore her and her cryptic comments and her LOOK.

Now, present moment. What does any of this have to do with Weight Watchers? I was doing WW on line since January. But they offered a deal at work and were going to have meetings there. So I signed up and arrived early to the first meeting last week.  Who do you think walks in to join? Mind you, if she has ten pounds to lose, it is a lot. So there I am and all the old guilt, resentment, and uglies surfaced. I could barely speak in the meeting. We had to share why we were there and I wanted to stand up and scream because my mother was a mean bitch and so are you….(looking at this woman). But in a shaky voice I mumbled about being a big beautiful woman and that I was here to get healthier. I went home so upset I thought I should quit.

But I did not. Instead, I challenged her. She has four other participants and we have our own team from HR/ED. We will win. This week our team all had significant weight loss. I am doing really well, after a couple of stalls. This will happen and then I lose a few more. Right now I have lost 5% of my total body weight from where I started. It’s all numbers. I am still big. I am also still in pain. But I have not had a shot in two months. It will be interesting to see what happens once I get a shot and calm the inflammation. Right now I can barely walk so I am not exercising. But that will become necessary soon.

The team that loses the most total poundage gets a lunch provided by the other team. I will enjoy watching her serve me……hahahah. I keep holding on to that.

 

 

 

My Pac Man life

pacman-2

When I let the dogs out this morning, I noticed they had dug little paths in the snow going off in various directions. They look like the little icons in Pac Man running and then stopping, turning around and going in a different path. The selection was limited because we have so much snow. I watched and thought, this is what I feel like lately.

I am at loose ends again with seemingly no direction. I wonder if there will ever come a time when I won’t feel like that. I would think at this point of my life, I could relax and not worry about “things”.

Winter is not a great time for me and at this point I am so done with the snow. We are expecting a big storm again starting today, into all day tomorrow with snow fall up to fifteen inches and ending with a coating of ice. I can hardly wait. ::sarcasm::

I started fretting about it yesterday, turning myself into a raging bitch by late morning. My husband and I went to do our weekly shopping and so did the entire world.  We were all in the smallest of all the Wegmans. People had that glazed look as they would stop in an aisle and ponder the plethora of soups. I like to go quickly and I am a no-nonsense chic when shopping. Get in and get out. Yesterday, the plodding of the other shoppers was like the little ghosts in Pac Man that would impede the passageways.

I do not want to drive in it tomorrow. Bottom line: I am terrified of driving in snow lately. I am not sure when that all started, but I have to drive ten miles one way to my job. I have hills and curves, open fields of blowing snow and rush hour lunacy to contend with. By the time I get either to work or home, I am a mess with all my muscles in a clinch so bad they burn.

This is on top of the fact that I have not had a shot so my PsA is raging, which is a perfect way to describe it. So if I got stuck, I would be done. I can barely walk right now into the building at work, and that is when they plow. Last week, the plow guy never came and we all were stuck in the lot waiting for the environmental facilities guys to dig us individually out so we could drive home.

Right now, fear is my biggest ghost. But I do not have the strength to fight it. What is even worse is I don’t care. I would like to hole up in bed for the rest of the month, but then I am in so much pain that I cannot sleep, so that is not an option. Just lying there is great for about two hours and then I hurt from that.

And this is all because of the idiots who I had to deal with from the drug company. I took one of my stash of other shots (Enbrel) on Thursday with the doctor’s permission. The nurse who called read the note he wrote wrong and at first told me that I couldn’t. She called back about five minutes later after I had been crying in my frustration and apologized that she had read the note incorrectly and that I could take the shot. Again, what if she had not reread it? What if it was life threatening and she reads it wrong? Holy crow, this is what is out there. The Enbrel did not work, which is why we are switching to this new shot (Simponi) which was so screwed up in the shipping of it. I do not even know if this Simponi is going to work until I take it enough. I have to wait another two and half weeks to even order the next round. I should be a hot mess by then.

So why do I not just stay home tomorrow? Fear and guilt. We never close and the guilt stems from the visiting clinicians who still have to go out and make house visits. But I am not thirty years old and they chose that job.

All these little ghost popping up and stopping me. I always loved that sound that Pac Man made when he was defeated. That is how I feel …….   Rrrrrreeennnnrrennnnrn….. ::gone::

Suffering and compassion

reaaching

I have been reading some posts that stuck with me for the past few days so it is time to write my thoughts. The Good Doc wrote one that took my breath. It was about suffering. It was about hopelessness. See the post here. https://doctorly.wordpress.com/2015/01/23/fly-fly-away/

No one knows truly what another is suffering with. The word suffer conjures up images of intense poverty and starvation for most. But everyone suffers with something. I am at loss for why. Many religious fanatics would say it is the will of God. But does that make sense when in the same breath they preach goodness and benevolence coming from this same entity. Why would a higher power want its “subjects” to suffer? I never have nor will I ever understand this.

Do we all have some form of suffering that challenges us? And who are we to judge the level and which is more wretched? Why is it we accept the level of suffering in some and not others?  I could list the things in this world that outrage me and yet, that is about the extent of what I do about it, much like most folks.

And that is because I have to deal with my suffering and getting through life. And truly, that is about what it sums up to be. Getting through it all and making it to the next day. Believe me, my suffering is nothing in comparison to others, but that’s not the point. We all have a level of strife and frustration that is our suffering to deal with.

What makes suffering so miserable is that even though we all have it, none of us feel or deal with it the same. And you cannot truly understand or appreciate what another person is dealing with because being human comes with multiple variables. What you may be able to deal with, I cannot and vice versa.

When I read the post about the girl dying from Lupus, I felt a connection of suffering with her. I too know what it feels like to live with pain.  I too know the frustration of losing the control of the body to something that will kill me eventually. However, my death is not imminent like hers.

I am not wheelchair ridden and I do respond to medication. However, the pharmacy still has not shipped it. Friday I was on the phone for two hours. I was put on hold and just left the phone on speaker. I must have out waited her because when she came back on she said they were shipping my drug and went through the whole procedure to set up the delivery. It was all a lie. She was just getting rid of me. This is my form of suffering because I spent a weekend of not being able to sleep more than a couple hours at a time because of the pain. Is it the same as the girl in the chair? Hell no, but it is my level of suffering.

So what is the point of this post? Although I do not understand suffering and I certainly do not tolerate people who lie to me, I have to live with both. And although it really rankles me, I have to move on.

When I read the post replies to the Doc’s story, I saw different levels of compassion. The Doctor herself has an extraordinary amount of compassion and empathy which is truly amazing. Other posts were not so empathetic. I think unless you have felt the constant and profound pain similar to what this woman in the chair feels, it is hard to imagine wanting to be released from it even if it means death.

So the answer to suffering is compassion. But not only compassion to others, but also to ourselves. I know many of my friends who silently suffer because that is what we do, especially women. We wear our suffering like a badge. “OH, I have so much to do, I am so fat, I have to take care of this person or that child” and so on. They are all valid levels of suffering.

What would happen if business were built on integrity and compassion? What would this world be like if we taught kids from the get-go what compassion is and why it is necessary? What if bullying was not a trend but treated like a plague. What if the government was really concerned about its population it serves and not about self-serving? The list is endless. And none of it is in our total control.

But self-compassion is. So for today, take care of yourself. I think if we did this more, that the compassion would naturally extend out to others. And if you know someone who is suffering, take a moment to just be present for them. That’s all it takes sometimes. Just be there. Listen, care and be compassionate.

 

Bariatric Surgery or BS

I had an interesting experience today and I feel right now, not very pleasant. I am going to share it and I will admit right up front, it is taking a lot balls for me to talk about this. I really want people to comment on what I am about to share. I think the opinions will vary and I am asking for honest feedback. I know I am opening myself to a lot of criticism.
So let me explain. I had a horrible day about three weeks ago. I was so upset and scared and I could not stop crying. Silly thing now, as I have no idea why. Just one of those phases I think. But I got on line and started poking around for support groups. I think at least that was what I was looking for. I love to spend hours on Google searching things out. I start with one thing and go off on a completely different direction. I used to sit and read my home version encyclopedia. I think it is why I am such a master of inane information…
I found this website for a therapist who specializes in people with PTSD, trauma issues, eating disorders, family counseling, anxiety and other problems. She offers help with life balance. I thought humdang! Digging in further into her site she talks about mindful eating and body acceptance. I was so thrilled I sent off an email asking for a session. And much as I think that cognitive based therapy can be dangerous with the wrong therapist, I was willing to try again.
I get there five minute before my appointment. I wait in the waiting area for about 2 minutes. I can hear her talking to someone. I thought, ok she is on the phone, so I knocked to signal I was there. She did not answer. I waited again five more minutes and knocked again. She said she would be right out. Ok. She was with someone so I had no problem. Then she gets me, I sit down and her phone went off. She answered it and left me and went to the waiting room to talk for another ten minutes. It is now a half hour into my appointment time of an hour.
She finally comes in and starts to fire off questions. Of course, she is taking a history which I had expected. Some of her questions were weird and some were pretty probing. But I answered honestly. I think it sort of shocked her. We swing around to talk about my weight issue. I am very uncomfortable talking to anyone about my weight, but hey, that was one of the reasons I was there. However, she went right into something I was not expecting.
She went on the charge of why I should have bariatric surgery. I felt myself flush and I had to hold my anger in. This is the second time a Doctor (she is a PhD doctor) has done this. She knows nothing about me except a brief ten minute interview. I started to explain that my medical issues with Factor V Leiden and Psoriatic Arthritis do not make me a candidate. Matter of fact my two GPs have said not it is not a good idea. She did not know what Factor V Leinden is. My bet is she does not understand that PsA is an autoimmune disease and not osteoarthritis.
She starts to tell me all sorts of things about how when you have the surgery your metabolic rate changes. It is different than dieting because you are not restricting food so that the body goes into shut down and hordes calories. I just shook my head. How is it not restricting calories. It most certainly is because you cannot eat a lot of food without getting violently sick. Talk about Pavlovian training. Eat too much and you will get sick. I did my homework on bariatric surgery along with having several friends who did it. They change the capacity of the stomach by constricting it with a band, stapling it or suturing it or totally by-passing it so food goes right in to the small intestine. Oh my good gracious. How does anyone not see this  to be mutilation of some form? I understand that it has helped many people to lose weight when they could not any other way and that is fine for them. But I told her, not for me. I did not come to her because I was desperate to lose weight. Matter of fact, I was more at peace with myself and my body before I went into all this self-evaluation and discovery. It was peace I was looking for and self-acceptance. I would still be troubled if I was a size 3.
She went on to say how she had the surgery and lost all this weight and so forth and so on. She said I will never lose weight, even forty pounds. I was totally turned off. I became a bit brittle and she felt it. When she asked me why I was pulling away, I said I was not interested in bariatric surgery in any manner. She said she would send me some literature. I said fine. We finished our session with a few other things. She set up another appointment, which I am not sure if I will do.
There is a ton of information out there on these barbaric…oops I mean bariatric processes. They all say the same thing. I understand how losing weight can be life-saving. But I also read about the mortality rate and the long term prognosis of it. There are malnutrition and vitamin deficiencies for sure. Hair loss, anemia, major poop and intestinal issues, blood clots, infections and other ramifications are all in the literature down at the bottom. All say the crappiest statement ever invented about how the cure/medicine comes with issues which the doctor or whomever deems worth the risk…. I paraphrased but it is on most medicines and other medical documentation. I want to change it to … “You feeling lucky?”
So again, in search of trying to better myself, I walked away feeling like a failure and disgrace. I am angry. OHHHHHH am I angry. Why is it we can do all this medical research on obesity and yet not find a cure other than mutilation of the digestive system? I read recently a medical journal article that there may be some connection in a T cell formation that maybe linked to obesity. That same rotten cell also has a lot to do with cancer and can you guess…Psoriatic Arthritis or autoimmune disease. Why can they not figure out that what you put into your mouth couple with the output of energy does not always equate with body mass. Yes, for some it is about what they consume. But if it were totally up to that, then everyone who eats McDonalds would be huge. But they aren’t. Only a select group of people consume food quantities which have an impact on their weight. Try explaining that to some doctors….they will laugh at you. If you are obese, you eat too much. Period! BULLSHIT. I am not going to go into a full rant on this right now.
Although I have a ton more to say on this topic, I am getting very upset. I need to go to bed and I am all cranked. If it were up to me, I would wave a magic wand and make everyone in the whole world obese so they can see that is only a body. We attach so much to image that it makes me crazy. Would we stitch a lung closed so smokers won’t crave cigarettes. Would we suture alcoholics mouths closed so they won’t drink? Would we give women with PMS a frontal lobotomy for depression…..which, by the way IS what they used to do to women and not too long ago. Think of that. I guarantee that someday in the future, they will look back at bariatric surgery as pathetically as primitive brain surgery. Hey, we finally figure out putting mercury in our teeth was pretty stupid.
Tell me what you think.

In honor of the word Vagina

I have some wonderful down time these past days. The weather was warm enough to sit out on the deck, albeit next to the house instead of my usual spot. It has given me some real time to think about a few things and I thought I would share them here. The thing that has been weighing heavy on my heart and soul is what the heck am I doing with the short time I have left on this earth. This has been a growing concern which has become primary in my thinking. When I have tried to discuss this with anyone, it is dismissed usually before I can even get my thoughts out. People do not like to face mortality, even when it is not their own.

I am in-charge of all the educational needs of the all the staff including clinicians for two agencies. I was also hired to create a leadership program and a career succession program. I manage a nurse who does the actual clinical training and PT who does the body mechanic training. Within a year, I was in charge of the Patient-Family Centered Care initiative. What I was not prepared for in any manner was the ostracization I received.

Things were fine until I started looking under rocks. And what slithered out was pointing directly at people who unfortunately had a lot of power and time there. It was all they had ever done. They did not want change and especially from someone who they deemed not qualified because I did not have a RN after my name. No one understands that an administrator in a school system does not know every subject, but they know good education when it happens.

I am beating my head against a wall. Close friends say “just get out.” It is not that easy and what I am going to say is going to make me sound like a sap. I am bolstered to talk about this after reading a post from fellow blogger, and a physician, Victo Dolore in her blog Bridging the Gap With Silk Draperies.

I really care about improving health care. However, I will never be a clinician. This has haunted me for the past three years. I have felt there was something wrong with me because I am so passionate about a situation I am never going to be accepted in. The good Doc mentioned above wrote another post entitled Yes, Vagina, there is a Santa Clause… (let’s see if I get more hits for the word, ha!) It is hysterical and I fell in love with her writing. But she said one thing and it went right through me like an electric charge. And I quote: “For instance, if you are worried about spreading your legs for me because you did not shave your hoohah that morning, I can reassure you that I DO NOT CARE. Not one iota. If you think your doctor does care, you should run away. You should run very far away very, very fast. When we look at your vagina, we are looking at it clinically”

https://doctorly.wordpress.com/2014/11/13/yes-vagina-there-is-a-santa-clause/

This is a truly hysterical post and you should read it in its entirety because it has a strong message. But the words “looking at it clinically” hit me hard. I get it. To be successful as a clinician there has to be some disconnect from human to human. You have to be able to look at the body as the biological miracle it is but also completely disengaged. It is pure science. And it hit me. I cannot do that.

The classes I teach in orientation are the touchy-feely stuff like customer service and diversity. I feel I do a good job of motivating people to see others for who they are. Many of our new clinicians come from a hospital floor where they never see the personal side of their patients. They do not start the healing and most often, they do not finish with them either. In home care, you are there to the end, whether it is recuperation or hospice. You are immersed in the family. You are the stranger in their environment. It is a big change for many. You do not have the same control as you do in a facility or clinic. Home Care is hard work and it takes a special type of clinician.

One of the new classes I am teaching is working with them to understand motivational interviewing, which is another new buzz name for coaching. We are trying to get them to incorporate the patient and family in building the care plan. I am trying to undo some of the disengaged clinical aspect of care and omnipotent thinking that is so engrained in their training and more easily facilitated in a clinical facility than in a patient’s home.

I took hospice training last year and then completely chickened out when it came time to volunteer. I have been asked many times by one of the clergy on staff to come up to our hospice facility and volunteer. He feels I would be a natural. The Volunteer Coordinator got me in my office last week. She pleaded with me to come up with her. I was honest and told her I was afraid. I said I do not handle death well. She said, “no one does. We all cry.” She wants me to work on a project called “Loving Hands.” I would be taking pictures at the request of the family of the hands of the soon-to-be parted with their loved ones. It is a beautiful concept and I would like to do it. But I am afraid. I know I will be thinking no one held my mother’s hand thirty-six years ago. I still feel the remorse that she died alone in a hospital bed. Will I be able to disconnect and just shoot the photo? I am pretty sure I cannot do hands on care. I KNOW I cannot change anyone nor actually deal with the many bodily functions that become disabled.

So to round back to the beginning of this post about what am I doing with my life… Just writing this very long post helped me round back and focus on what is really important. I will not ever be accepted there because I am not a clinician. That is not what is important. I am a change agent and that is important. But do I have the strength anymore?

I have done some really good things there. My Core team fought for two years to get update electronics and air cards for clinicians in the field. They used to have to go to a Starbucks or similar to get Wi-FI to download new case information and documentation. Ridiculous! We had to gather data and do report after report to the point there was no argument left. We now have a standard nursing bag we had field staff design. We have skills competencies yearly that receive great reviews. The annual mandatories I write are completed with much less complaints and staff actually learn something from them. I instituted New Managers Operational training which has created opportunities for staff to be promoted successfully from within the agency. This year we are incorporating more Leadership classes. I reinstated a Clinical Ladder program for all clinicians that had forty-eight staff members complete this year and is growing. What was once a favoritism reward for a select few popular nurses now is available for all clinicians from LPNs to OT and Social Workers. The Ladder has now has an air of accountability and the significance of being a member of an elite group. I brought in nursing schools for a day for a college fair and had many staff sign up including five nurse managers to return to school and get a higher degree. I brought in Nurse Leadership classes which were jammed with participants. The grant provider who offers the classes said it was the biggest turn out of any agency they have in the state. It cost us nothing. I brought an organization in that does culture change for hospitals. I simply wrote them and began a dialogue and ended up having them create a unique survey for the agency on accountability and patient safety. They issued the survey and have created a summary which will be presented to the Administration team next month. This process usually cost about $50,000. I got it for FREE. This was almost not to be as one of the people I spoke of previously tried to put a stop to it. What will happen with this, I do not know. I am hoping it will reinforce a Patient Safe Handling Committee, which I have on the drawing board. One of my new projects this year is to bring an on-line training system up and get it running. Once up it will save hours and money in training costs. This has been a three year struggle for them to see the value. I am also revamping the content of much of the existing training. It is many years old. I was so shut down and afraid to do this because  the ramifications from the old birds who wrote the stuff had me intimidated. Even though the Core team is disbanded, our study and report is shaping the possibility of a new pay structure. There is more. But my point is made.

But every single thing mentioned was with massive struggle and conflict. People are taking credit for things I did, and although it not the accolades that make me fight for things, it does discount my work. There is more discord and misery in any job I have been in and it permeates the building. The week of Christmas, people were dropping like flies from exhaustion and fatigue.

My New Year promise this year and in the past years is to work on not being so afraid of things. I tried Indian food for the first time yesterday. I liked it and it got rid of some incorrect beliefs. I have some other things in the fire too. But looking towards the future….am I to continue fighting the fight at work which leaves me drained, stressed and fatigued? Some nights I come home and I am so worn down I sit in my car and cry. It takes a toll on my body as I am so physically tied up in knots from the fear and stress that when I sleep and relax, I spasm into Charlie Horses that Roy Rodgers could ride on. Because of the physical issues going on I have only so much energy. Is this me and will I be the same elsewhere? That is a big possibility. At the age I am at, I really do not want to start over.

I really have something in mind that I would like to do but it is not panning out. I am going to hang on for a while as there are proposed changes that are coming, including a complete redirect of Clinical Operations. I am really hoping that this will make a difference.

Sorry for the rant, but that is what this blogging thing is about.

 

 

 

 

Trauma induced Obesity…. Really? No Sh*t!

rain clouds'

I actually wrote a whole different blog last night. I decided to sit on and not publish. In the morning, I reread and tweaked it and thought I would send it out anyways later. But in going over my emails, I found this email from a friend and therapist who sent me a blog article. I did not get to read it until later in the day. I had taken a break from work and decided to read through. I sat there at my desk crying.  Fortunately no one was around much. I have a heater fan running so hopefully no one heard me sniffling. I stopped and mopped my face up and decided when I got home to reread the blog and then write. Oh…. I was going to write.

I spent time tonight working on house stuff, laundry and the sorts and just sat down a little while ago to read the blog again. I was actually not thrilled about facing it again. I then went to the site and looked at some of the older posts. It took my breath away. It is so overwhelming to the point it knocked me out of writing what I wanted to. I am just ….and I am not sure the right word is that I am. I am mad because there is so much statistical information out there on trauma induced illness and yet it is so unknown by practicing clinicians. I had written about the ACE study before in my blog. If you have not done an ACE study, do so. And then read the implications. It is enlightening.

http://acestoohigh.com/got-your-ace-score/

But now as the night has progressed and I spent it reading instead of writing, I am going to let the blog speak for itself. It is quite a collection of information. I am going to share the one line that made me cry. And it is terrible. The author is sharing the story of how the doctor who was working in creating an obesity clinic was upset because he was not successful. He went on to dig into many of the (obese) patients’ history and found a resounding amount of them had some form of childhood trauma. That is not what made me cry….it made me slap my head and say out loud, “Really? No shit!” This is right from the Dr.’s story after he had given his results to a body of educated physicians and clinicians.

So, if you were Vincent Felitti, whom would you pick as your first audience to reveal your stunning findings? A group relatively informed about obesity that would greet the new information with extreme interest, praise and applause? Natch. So, in 1990, Felitti flew to Atlanta to give a speech to the members – many of them psychologists and psychiatrists — of the North American Association for the Study of Obesity. The audience listened quietly and politely. When he finished, one of the experts stood up and blasted him. “He told me I was naïve to believe my patients, that it was commonly understood by those more familiar with such matters that these patient statements were fabrications to provide a cover explanation for failed lives!”   http://acestoohigh.com/2012/10/03/the-adverse-childhood-experiences-study-the-largest-most-important-public-health-study-you-never-heard-of-began-in-an-obesity-clinic/

……..A fabrication to cover FAILED Lives?   Oh man did that stick in my craw. Truthfully it makes me furious. So again, because someone is obese (and I hate that word with a passion) the presumption is that (1) they lie and (2) their life is a failure. If you think this is an exaggeration, you are not in the world of being overweight. The reason I was crying is because it happens a lot. To read someone with such credibility admit this was overwhelming to me. It is pervasive in the medical field and I face it every day at my job. That is exactly what people, doctors and other clinicians have projected to me. I have heard other large people tell about me about their discrimination. A person I know just died because they refused to give her a liver transplant because she was overweight. Prime personal example: years ago, I had gone to have some work done up to find out why my a1c had spiked. I had the Chief of the Endocrinology department tell me I was a waste of time, that I would never be able to lose weight or exercise like HE did and so he was going to march me down to bariatric surgery immediately and get me fixed. (I have to breathe deeply every time I think of this) He never looked at my chart. If he had he would have seen my blood sugar had spiked in three months after a life time of low to normal readings. It took me having to read and discover that the prednisone and other drugs they slammed me on for the PsA all raised blood glucose. AND when I went off, it came back down. I went to see a nephrologist after one of my kidneys failed. Again, he never discussed anything but the fact that I was overweight and he wanted to bet me, BET me, that I would NOT be able to lose weight. I think he thought he was challenging me. Again, no one ever told me for a year my right kidney had failed…first concern…and that I had developed stones and they were a by-product of the PsA…it took me eight years to find that out and I should have been medicated then, eight years ago, to reduce the creation of more…which happened. No one can see past the weight. I am a non-person.

That last statement about being a non-person is very telling. I am going to stop tonight and let it just sit out there. I hope you will skim through the blog article: http://acestoohigh.com/2012/10/03/the-adverse-childhood-experiences-study-the-largest-most-important-public-health-study-you-never-heard-of-began-in-an-obesity-clinic/