A journal of healing

Archive for the ‘Health care’ Category

Obsolete

Getting older is a natural pathway we all cannot fight. It happens. I am turning 63 on Thursday. This year has been one of a lot of changes with me. I have not accepted them graciously. It has nothing to do with how I look as I don’t see a lot of change in the mirror. I think it is partially the fading of some of my vision. My physical condition has deteriorated a lot but there is little outside appearance of that other than a limp.

I have become obsolete at my job. It is very difficult for me to handle. I used to be enmeshed in every project, every improvement plan, and in charge of at least one major strategic initiative for the agency for the past five years. I felt needed. I thrive on multiple assignments. Now I am obsolete.

We became a Lean organization and it was my job to get Lean embedded in the organization. I was initially in charge of the whole Lean reorganization until the Medical Center decided to put someone from there who was much more experienced in Lean in charge. I was fine with that. But she took over everything. I will call her WtF. WtF was so dominating and controlling that many people struggled working with her, not just me. She got several people fired who had been with the company many years. All the time WtF was there, there was this undercurrent of fear that people had and rightly so. She had the CEO’s ear. She had her minions and she had her enemies. I was needed by her so I was neither. I know she permanently wanted to come into the agency but that was not part of her contract with the Med Center.

I was on the board that over saw all the projects. I was on about five other projects as a team member. The first project done was the changeover to a new capture system for billing for the aides. it was an ugly power struggle through out the project. The Director of the Aides (31 years with the agency) and the Director of IT (12 years) were the co-captains. They both ended up getting fired afterwards because of fighting or not getting along with WtF.

There was so much turmoil and change. Our financials were terrible. People were very unhappy, scared and some were just angry. It has been an unpleasant place to work for a long time.

About a year later, WtF was going to be leaving according to her contract and we needed a governing body to continue the Lean initiative. A small board was formed and I was not asked to sit on it. I was devastated. I knew it was because of WtF. They announced the group of five and they were all the minions of WtF. One of them had no Lean experience at all and was not on any committees. The next day after they announced the group, the CEO came over to my office and asked me to join the group. I was crushed and it showed completely. I did say yes, but by then, I was trashed. The damage was done. I was insulted that I was an afterthought. I look back now and I see that was the turning point in my career.

I was a captain of  the Culture of Improvement initiative and earning my certification to be a Lean Practitioner.I did complete my project and it took over a year. I would have been the first but  I had to fight with WtF  to get certified. She was in charge of saying who was getting certified. There were other people who were winding up their projects and those she liked got through easily. Those she did not, she fought with and had a harder time to get certified. It was so apparent and so unfair but the Administration was so blinded by WtF they allowed her. After she left, we certified five more people.

It will be two years this August when we first met for Lean. We won a huge award for the work done in the agency for Lean. The proposal for the award included a huge portion of the work I did in getting Lean imbedded the organization. The minions all went to the dinner and ceremony, even though they really had little to do with the initial projects that the award was based on. I did not go to the ceremony.

Meanwhile, these new younger folks are now the stars of the agency.  At first it was a slow progression of responsibilities. But now they are in charge of a lot. The one who had the least amount of Lean experience was made the Director of our Lean initiative. (Really, I know). I already see a slipping in the progress we made and projects stalling or failing.

I have watched several other projects that I was in charge of slowly slip out of my hands and into theirs. And of course, they don’t want my help. It is not their fault. And the truth is: I am not volunteering for anything anymore. I am not the first to raise my hands and say, “oh I will do it”. I am tired of working so hard for so long. So I am responsible for this change too. I do not trust anyone now. I do not want to fight and I do not want to get hurt. In truth, I want out.

I am the oldest Director in the whole agency now. I am older than everyone on the Administration team including the CEO. That’s scary. Four of the six administrators have less than three years with the agency. There were so many changes in the last three years. I guess it is a case of out with the old and in with the new.

I am hurt. I am wounded. I did so much for this agency for the last six years. And now I am being put out to pasture. I remember thinking that there were people who should retire when I first came there. There were many nurses and managers who had been with the company for over twenty five years. The Directors were my age or older with significant experience and education. (That’s another thing: Directors are supposed to have Masters and only three of the eight of us have a Masters.) Two of the original Administrators that were there when I started were older and have since retired or were made to retire. Only two of the directors who were there when I started are still there. Four directors were fired and one demoted.

How did I get to be one of the old fogies who need to retire?

It’s not like I all of a sudden became stupid. Yes, I walk slower but that’s because of my arthritis.  I see the committees I still sit on going through the same “stuff” that has been the issues forever there. It is like a hamster wheel and there are new hamsters. Life is a made up of circles and maybe now it is time for me to get off this one.

I want to either retire, or I want to find something that to do that will make a difference in the world. I prefer the second choice as I think I am still able to do something worthy. I think it is sinful how we treat our elders in this country. We remove them from being productive and then warehouse them until they die. I do not want to go that route.

Frustrations

I was going to add an image here, but after looking through clip art I was so offended and insulted that I decided I would not put a picture in. Google images for obesity and take a look at the insulting and sarcastic images out there.

A two second look was all he gave it. A brief glimpse into the Internet and he declared his ruling. “It is not a reported side effect.” He had gone to the manufacturer’s website and true, it is not listed. I had scoured the internet for information before taking the drug. But here I was, three months after starting this new shot and 16 pounds heavier. He deduced it must be due to my consumption. I looked at him through tears and said, “Do you know how much food I would have to eat to gain that much weight that quickly?” He could not respond. I sat there, tears streaming down my face and said, “You are calling me a liar.”

Here I was again with a follow up visit to the rheumatologist office. At the December visit, I was having such a terrible reaction to the medication, Humira, that they thought I had damaged my heart. I was sent through many tests and had to visit a cardiologist. The results of the tests were my heart was fine and strong. I was taken off the medication and improved immediately. But there was an impact on my kidney function again. Once off the drug, I immediately started to take the few pounds off I had put on.

One month later, in January, I was on a new shot called Stelara. This shot is outrageously expensive and not everyone is approved for it. I was only because there was not much left for me to take. I have taken within the last three years Enbrel, Simponi, Cimzia, Avara, Otezla, and Humira. When I first went on medication thirteen years ago, I was put on methotrexate (MTX) and prednisone. Six months in I was peeing blood. I told my doctors who said it was because I was on Coumadin. I stayed on this drug for a year and a half. My glucose A1C went from 5.6 to 13. My blood pressure went up and I gain thirty pounds.

They took me off the drug and sent me to a specialist because my kidneys were damaged. One kidney seemed to not be working at all. The nephrologist intern said to lose weight. That was the extent of the visit. The damage was there and there was nothing they were going to do. My kidney did get better over time and my output levels improved. I also dropped the weight and then some and lowered my glucose levels too. It never returned to the 5.6 but stayed around 6, which at that time was ok.

Then, I started having kidney stones. I passed and collect over 32 stones. They were big and they were small. Some hurt terribly, others not so much. I never went into the hospital and I probably should have for the last one back in 2015. It was so big that I struggled to pass it. The labs results showed dangerous levels of uric acid in my blood plus other indicators that the kidney was not working. But no one did anything. I even showed the stone to my doctor after I birthed it and he cringed. My kidney labs never went back to normal. But I also have not passed stones because he put me on allopurinol. Kidney issues are now commonly reported now for people with psoriasis and psoriatic arthritis and they are beginning to do research on it. But no one has admitted that the medication exacerbated this situation or this correlation.

Here I was again, sitting in a doctor’s office being told to go on Weight Watchers. I have been on WW so many times I know the points for just about everything I eat. Last time on WW, I gained weight. Then the discussion about bariatric surgery came up again. I just gave up and sat there crying. I am so weary of all this. I told him I put on 3.4 pounds from the reading I did yesterday in the morning to checking the scale at night when I got home from work. It went back down the next morning but was about a ½ a pound more from the previous days. I have watched in horror this slow creeping. And yet, I have done everything I can to be careful in my consumption. Nothing changes with me in my diet. I eat the same breakfast and lunch as I have for years. Dinner is always chicken and veggies or salad most week days. I have cut out salty things including my beloved cheese.

On top of the weight, my blood pressure sored to dangerous levels right after the first shot. This is a common side effect of the shot and reported in the material. My kidney output again indicated there was a serious issue. My labs were terrible and the levels indicated were now in stage four CKD. My PCP was so concerned he called me in to the office. Again, he gave me medication for the BP. But again, the weight issue was my fault. After a week on this new BP medication, my once skinny ankles looked like Barney Rubble’s. The BP came down a bit but not enough. I was so puffed out that there were nights by feet hurt. I finally said enough of this and he put me on something else. Too soon to say what will be that outcome.

I will admit I am terribly afraid. The weight issue is such a horrible thing for me. Trying to convince people that I do not eat what they think I do is a never ending battle for me. Both doctors have recommended bariatric surgery and both doctors admit it would be very high risk for me. No one sees my health issues past the fat. I am not a person; I am a morbidly obese non-compliant patient.

I went to the patient portals for people with PsA and Psoriasis. In less than an hour, I had four pages of patient’s quotes who reported large weight gain on Stelara. It’s out there. I am not alone. And the frustration is not mine alone either.

And then I got it. The biggest selling point of Otezla is that people lose weight on it. It is true documented fact that you will lose weight on it. It is from being so sick. Those who lose weight reported diarrhea, nausea and other gastric issues. I was on it for a short time and it made me terribly sick. I could not walk straight. I felt like I was falling over all the time. It was like living with the worse hangover. It did nothing for my PsA or P.

This Stelara is a fairly new drug. It is expensive. It costs over $20,000.00 a shot. That is why most people do not get it as insurance companies do not want to pay that. It IS amazing. My psoriasis is almost gone. My ability to move is much improved. My pain levels have not been this low in years. I am grateful for this. But would people even try it if they knew there was a good probability they would gain weight on it? No, they won’t because being fat in America is the worst thing possibly you can have wrong with you.

I read somewhere that people would rather face debilitating depression and face suicide than take medication that would help, but had the side effect of significant weight gain.

I write this for people who have medical issues that may be similar in hope there is some comfort to know it is not just you. I found over fifty people who are on the same medication as I who took the time to write about it in post on a patient board somewhere. It is a small percentage of users? I do not know but I have to think it is more prevalent than that because not many people use or will write on these patient boards. Does it matter? Yes, because if we do not advocate for better treatment we will become slaves to drug companies selling poison. Doctors need to be aware that not all obesity is caused by consumption. I will probably never in my life be able to prove that. But I am going to try.

How does that look?

This week and a half has been crazy. A week ago Wednesday we had a windstorm of epic proportions. Then this past week, on Tuesday and Wednesday, we received almost three feet of snow with more winds. They did not call it a blizzard, but it sure looked like one.

I do not like to drive in snow, especially blowing snow. I knew the storm was coming. We all did. I prepared. I moved all the classes, prepared my instructors and staff and told them to be safe and stay at home. I and my salaried staff all have access to the work systems from our home computers. I planned on working at home. I am actually very productive at home.

Wednesday morning, I get an email from my boss that if I am staying at home I must take PTO and so must my staff. Her main concern: How did it look?  Four people on the HR team came in, including her, but no one in Education did. How did that look? She said since I was a director, I should have come in because it looks better.

I replied, as a director, I executed an emergency plan that kept people safe. I had spent Monday rescheduling all the Tuesday and Wednesday classes, in case. I told my staff to bring work home in case. They would have been productive at home, as I trust them. I said I am not crossed trained to do anything else at the office. I am not on the Emergency Planning Committee, I cannot triage, and I am not in any manner essential to operations. I cannot even answer the switch board. I asked her, what would you have had me do if I did get in? Her reply only was to say it did not look good.

This is just one more stone in the bucket that makes me want to stop working. Those who came in are twenty and thirty years younger than me, including her. The three HR staff members do not have much in their PTO banks and did not want to waste it and one lives right around the corner from the office. This Momma don’t drive in blizzards anymore. Not for anyone. How would it look if I was somewhere in a ditch? I can’t walk for very long on flat dry land. Where am I going in a blizzard? I told her that from now on, I will take PTO when the weather is bad, so plan on it. I have enough PTO in my banks this year that I may lose it if I do not use it. That is what being faithful and not taking excessive time off does for you.

Maybe this is just her, but I have worked for other people where appearances are tantamount. It does not matter how good you are in your job, but how you make them look. This is not the first time with this boss that she was more worried about how she looked than being judicial. Our CEO is also very preoccupied with appearances. She enacted a dress code right out of the 70’s for in house staff.

I understand that health care providers need to be available and that part of the job is to be there in emergencies. But it was so bad that the visiting clinicians were told by the VP of Clinical to only make essential visits and to remain home….and work on audits. How does that work? The folks who could and should have reported were allowed to stay home and work. Supposedly he made the call before he checked with the CEO and VP of HR who should have made the call.

   Dad digging a poop spot

The medical center we are connected with sent an email saying essential staff only. That means staff who work in support areas such as HR and Ed were not to report. Our CEO over ruled that and said she was not calling an Essential Only Staff emergency. She was concerned more about the almighty dollar. She was also very upset because none of the switchboard operators came in. How did that look? One of the HR staff who used to answer the phones was in so she was sent down there. This is the gist of why everyone was so pissy.

We have triage nurses who are set up to answer incoming calls by switching over the system to their home phones. HELLO??? Why did they not do that? We do it every day from 5pm to 7 am. Pay them the frigging overtime.

My loyalty for this agency is dwindling rapidly. My desire to participate in crazy behavior in pursuit of the almighty dollar is gone. It is just not that important to me. I did the right thing and my team all agreed. They too were ordered to take PTO. I had gotten up at 5:30 on Wednesday and called my paraprofessional educator as we still had not formally cancelled a Health Aide training class. But we were prepared. We had warned them we may and would text them if we cancelled.  We texted everyone by 6:30 and they were grateful. They are not even employees and I offered a better situation for them. How does that look?

Just for an understanding of how bad it was out there, our governor called a State of Emergency for the whole state on Monday in preparation. By Tuesday, the county was under a travel ban and no unessential travel. All the malls, schools, and town and county offices were closed. The plows could not keep up. This picture below is my husband’s car. I could not have gotten out of the garage let alone the drive way. Our plow guy did not even come until almost 2PM.

But I shut off my computer. I did laundry and I actually sorted out my sock drawer. How does it look? It looks amazing.

Drug Testing

Potty

Just this month, our agency was surveyed by the Department of Health. It is done minimally every three years and it is something that evokes fear and great trepidation within. We did really well, but came up with one deficiency, which truly is unfair. They said that this regulation has been required since 2005. But, we never have been dinged before for it.  The State feels that enforcing this will help with the opioid addiction condition we face in the country.  It requires everyone who sees patients to attest to a MD or NP that they are not addicted to drugs or alcohol and then sign a statement. It is the stupidest regulation amongst many. Our agency now has to have over 500 staff, from RN to HHA sit before one of our NPs and sign off. It is costing us plenty in time and effort.

We drug screen everyone when they are hired. We mandate everyone to go to Occupational Health and piss in a cup. When in doubt, we can order a supervised piss, which means they are watched when then pee. Even staff who will never leave the office or touch a patient have to do a drug screen to be hired. We can also mandate any one at any time to go. It costs the company every cup full.

Every year, we have to sign off a health assessment where we HAVE to disclose any and all our medical conditions and medicines we are on. If you lie and get caught, you are terminated. It then goes to the Senior HR Manager, RN who reviews them and then they are filed. I personally find these invasive. I think for someone like me who is on a very expensive drug that this is pointing a target at me. In another report from the insurance company, it indicates the cost the company insurance has to cover, and hence the agency is aware of my burden on their insurance carrier. If they have to downsize….who would you let go?

We also have to annually get tested for tuberculosis with a PPD. It is a simple procedure but someone has to administer a shot under the skin and then someone two days later has to read it. There are hoops to go through if you come up positive.

So when I hear people bitching about the invasion of privacy and stepping on people’s rights when the conversation turns to mandated drug testing for people who receive government subsidy, I go crazy. Why not? This money comes out of my pocket to pay for them to have support and help. Without going into a moral rant, you should not get ANYTHING if you are on drugs. Ok, maybe a drug recovery program. Clean up and then we will talk. I mean everything from pot to booze. If you need money to feed your kids stop drinking and smoking. Even cigarettes are $10.00 a pack… STOP. Or go get a job and pay for your addiction on your own. That goes for gambling as well. I think that there should be a check on people who go to the casino and piss their welfare checks away while their kids are home eating paint.

I am all for helping people when they need it. I am not blind however and have worked in environments where people on welfare brag about how they are getting away with what it basically stealing.

I am coming up on retirement in a few years. I worked hard for the last 47 years. Every week I had money taken from me and put into a system that supposedly is going to pay for my retirement. It won’t. I will still have to pay for insurance and other health costs. There is no free ride for us seniors.

Do I seem harsh? Tough. We penalize healthcare workers and others all the time with drug testing. If you want money for food, free housing and other benefits….it’s simple. Submit to a drug screen and if you are clean, then ok. I also think there should be other strict limits but that’s another blog.

The Wall

reaaching
I have been accused of being a highly sensitive person. It is not a compliment. It means I react to things that others can let go. I feel too much. It is true and I have been this way my whole life. So maybe it’s just me, but the world lately seems to be angry and negative. It to me feels like what it must have felt like back in the late thirties, when Hitler was coming into fashion. I wasn’t there, so I am surmising. But whatever is going on right now is not pleasant.
In my own corner of the world, I see shorter tempers and more infighting. I see separation of thoughts about the state of the country. It is so divided, and I do not think that is totally bad. But how people are coping is with anger and supremacy. “It’s my way or the highway.”

I do not want to get too political, but it is hard to have a discussion about tempers without factoring in the current state of affairs in the white house. The current regime is causing great consternation to many folks, me included. And again, not getting political, it is about the treatment of people from the top down. All the inroads we made in the past fifty years seem to be slipping back into the abyss of Bubbahood. Discrimination, ethnic and race issues, and the general treatment of women as whole has taken a downward turn.

For example, Trump’s public treatment of his wife speaks volumes. He left her standing there multiple times during the Inauguration. He sharply spoke to her like a child. I said something about it to my husband and he said I was making too much out of nothing. Two days later, he pulled a similar stunt at a restaurant with me. He loves Trump. I realized that the Bubbahood is how he got elected. They will never see that treating women like an object, disrespecting and publically humiliating her is a big deal. And this will carry forth into the world of work and other areas, if given a chance to get a foothold. Think I am overreacting? Take a look at the legislation Trump signed about withholding money for organizations who even SPEAK about abortions. Where does the Bubbahood get the right to dictate what a female does to her body? Don’t get me started.

stone goddesses

It’s like the world has gone mad with hatred. We are going to build a wall to keep Mexicans out? Can there be dumber idea out there? And the cost; 12 to 15 BILIION dollars? How about we take that money and get rid of the donut hole in Medicare where millions of senior citizens get every year? If you do not know what that is, it is a yearly situation where if your prescription medicine gets to a certain dollar amount, you have to pay full shot for it. And for the geriatric set, getting there is very easy as many older folks have multiple heath issues all requiring medication. Take a look at the cost of diabetic supplies alone. And every year, more people get diagnosed with diabetes. (Mind you, they keep lowering the level of what dictates being diabetic and they will keep doing that as diabetes is big money.) This donut hole lasts until you pay almost $4900.00 out of your own pocket…every year. Folks spend their life having money taken out of their paycheck for SSI and Medicare, which shock upon shock, you also pay for Medicare premiums in retirement, it is not paid for….. only to get hit up for this stupid donut hole. It’s when people start making decisions about whether to eat or get their medicine.  $4900.00 may not seem like a lot, but when your annual SSI income is only $11000.00, it’s everything. But… we are going to have a wall.

Just try arguing that with someone who is a Trump supporter and you see the power of hatred and the Bubbahood come forth. They really believe it will stop illegals. Really? Ever hear of planes? Who is going to watch this stupid wall to keep people from crawling over or under it? Did we not learn anything from the Berlin wall? What about Canada? Do you know how many drug dealers import their products across the border from Canada? There is a huge illegal Asian influx as well. Maybe we should build a wall there too? There are places in NY and Vermont where I have stood in both countries at the same time. Take a look at the 1000 Islands and the St. Lawrence and tell how that would look with a big wall right down the middle.

sunset view

In my own work world, the State showed up on Monday to do a survey. A survey is a loose term for investigation. They are looking for errors, misdeeds, poor decisions, bad documentation and places to recoup money. This is our government at its best. It says, go do your job, but we are going to come after you and often to catch your errors and penalize you. Yes, there is a penalty for errors and they now can demand payment for them. Smart: hit an industry that is losing money daily due to government regulations and then make them pay more. If we have enough, they can shut us down, or take over the agency. I doubt we are that bad, but at one time, the agency was. But it creates an atmosphere of finger pointing and accusations. And yes, I get called out with “where and how was this person trained?” I have to demonstrate compliance. We have required mandated training and it better be documented. I spend countless hours retrieving this verification and so I was not worried when I had to pull fifteen people’s training documentation. But it sets up anxiety. This state survey was on the horizon and promised for a later time frame this year. Something triggered them coming earlier. But for the past year, the threat has been held over everyone’s head. We will find out next week how we did.

side 5-15

So it is at my work, it is out in the small community I live in and it is global. It is the little comments and attitudes that seem more negative. Being in public is abrasive. Driving is defensive. People are suspicious of each other. And it seems to me that everyone thinks that this is ok. It is acceptable to be rude and caustic; under the concept of being “real”. I like people to be honest, but being rude is demonstrating a lack of compassion and empathy for your fellow earthlings. It is Bubbahood.

And yes, this all really bothers me. I feel the energy. Too me, it feels like the air is full of steel wool. I come home worn out and used up. I spend the day putting out fires and calming troubled waters. I do not watch TV, but I like to look at Facebook at night. I see the infighting there. I argue with my husband and we have had screaming matches about Trump. We could not be further apart on the man and his government. There seems to be no escape, no island of peace. I keep holding on that soon, the birds will return and my oasis of a garden will return. Oh, and yes, I have a wall around it.

Fighting for my wellness

rolling fog

I am writing this morning for those who suffer with a chronic illness, especially one that is not widely known by lay people and the medical field. Psoriatic Arthritis is a crippling auto-immune disease that unfortunately I have. But that is not what this blog is about. It’s about advocating for yourself and you wellness, whatever the illness is. The fog is very heavy this morning outside and the grey engulfs the house like a wet shroud. It is peaceful but it reminds me of the travels I have had lately with the medical world trying to figure out what was going on with me. It is like traversing through a fog. I hope that someone who needs to know they are not alone will find solace in my words and the strength to fight on.

When I was first afflicted with this disease, no one would believe it was anything more than me being fat. I had very bad pain in my feet, lower back, and sometimes other joints. I played tennis at the time three times a week at a tournament level. It was nothing for a match to go three or more hours. Most times I would not hurt until afterwards, but then I started having back pain before the game. Stretching helped, but not much. My energy level also started to wane and simple tasks around my home would wear me out. After my divorce, the disease bloomed full on. The stress exacerbated everything along with another medical emergency. I can say that I went from occasional pain to constant in very short order. But no one would listen and the medical advice I got was to lose weight.

Funny thing, I did drop almost 35 pounds when I had the medical emergency but the disease still happened. I had recently switched to a new doctor after the one I had almost killed me with not letting me have a medical procedure I needed. Finally, when my hands started to turn into claws, they tested me. No one also correlated the funny rash that was appearing all over my body. It itched and it was everywhere. I went to the dermatologist and even he did not know what it was at the time. They thought hives possibly brought on by the stress of my divorce and move.

A year later, after the tests, the answer was psoriatic arthritis. The rash was a different form of psoriasis that did not present in the normal way of the white crusty patches. I ended up with that much later on in the disease progression. I had to make my doctor look past the weight and see the human. She was great afterwards and when I said this about that, she listened. She actually escalated my visit to the rheumatologist so I could have the help I needed. I have been with him for ten years.

Psoriatic Arthritis was so new (in the scheme of things) that there was little in the way of medicine. I was put on methotrexate (MTX) and prednisone. I felt better but after less than a year in, my sugar readings, my A1C, was 13. I never had high sugar before. I also was peeing blood constantly. I was having labs done but no one said anything until my appointment with my reheumy. He said my kidney crashed. I was then sent on a rotation of seeing specialists. I saw the most egotistical endocrinologist who said lose weight and a nephrologist, who said lose weight and an urologist who found nothing. The tests were pervasive and inconclusive. My reheumy put me on Enbrel. Slowly all my labs returned back to normal. Except my kidney function never was perfect again. My A1c went back to 5.6 and remained there for many years until slowly there was a creeping of it rising.

After year seven, the Enbrel started to fail. I then was put through two years of hell. My PsA started to flare out of control. My P was not so bad but was coming back. The first drug I tried was Simponi. I stuck with that for six months. My A1C kept creeping up and the diarrhea was so prolific, it changed my life. I will not go into much, but I learned to be very empathetic with those who have Crohn’s or IBS. My blood pressure began to be out of control. I told my reheumy I wanted off and he put me on Cimzia. Within the second shot, my glucose readings were 350 to 400. This is the shot that truly wrecked my ability to synthesize sugar. I went off everything for about two months. My BP returned to 127 to 70 and my A1 c went back down to 6.5 -7. Meanwhile, my PsA was not medicated and kept getting worse. I was also beginning to get covered in pustular psoriasis.

I had to let the drugs get out of my system and then we tried Otezla. This was supposed to be magic. It would possibly help me to lose weight. This was the worse of the worse. I felt like I was going to fall over at any minute. Walking was pure torture. It made the pain worse and I bloomed psoriasis like it was spring and I was a fertile field. Next was leflunomide. There was not enough time in between to get the old stuff out of my system before we put something else in. Then in July we tried Humira. I had tried it once before for a very brief time and it did nothing. I was hoping it would work this time.

This fall, after taking two shots a month, I had been on Humira three months. I was a mess. I knew I could not go back to the reheumy for a bit as he was getting frustrated with my inability to tolerate the drugs he was prescribing. This was a mistake on my behalf. I need to fight for a change again. But I was afraid, so I stupidly kept my mouth shut. I started taking potassium for the horrific leg and foot cramps I was having. I had one at work that had me crying in my office. Fortunately, no one saw me. By November, I was taking Advil every morning. I then added another dose at night. It allowed me to walk, but I was the walking dead. I slept an hour at the most, having to get up to pee or because of the pain. This went on for over a month. NO sleep, constant pain, itching so bad and in places no one should suffer with. I was a mess.

I had labs done and my kidney function was horrible. I stopped the potassium. I was not taking that much anyways but my potassium was a little high. My hemoglobin and hematocrit was in the dumper. It had never been so low. I have My Chart and can see my lab results. The graphs showed major increases where I did not want and huge deficits in my blood. My PCP said very little when I went to see him other than I was fat.  He actually said I should have bariatric surgery. I sat in his office in tears and thought, holy crap, I am back to square one.

Fortunately, a week later,  I went to my reheumy who thought differently. I was having mild chest pains, dyspnea, and my systolic BP was very high. He ordered cardiac tests immediately. I had an EKG, and Echo and a nuclear stress test. He said to stop the Humira and no Advil. I spent the holiday weeks in stress, in the hospital having tests and miserable. I had no strength, no energy, I could not walk, and I could not sleep. My skin was covered, my hair and scalp was awful, and I was crying every five minutes.

It is now about a month since my last shot. My skin is clearing. I have some energy and I can sleep much better. The itching was not from the P but from the Humira. I was having a very bad reaction to it. I went back to the PCP and made him pay attention to the blood work. He finally agreed that the issues, the elevated sugar and BP was from the drug, Humira. He said he thought so before, but he did not prescribe it. No, instead you just called me fat. I told him I was pissed but I did look into the bariatric surgery. I asked him if he knew that if you lose a lot of weight, and your skin sags, that they have to do more surgery and it is not covered under insurance. He smiled a sheepish grin and said yes, he knew. I asked if he knew the level of threat of that surgery for someone with a blood clot issue along with an impaired immune system, how prevalent sepsis was? Again, the sheepish grin…. Yes, he knew the risks but felt he had to suggest it. He has no idea how upset I was.

My BP has dropped forty points consistently. I bought BP meter for my home. My glucose is stable but still too high. The tests revealed that my heart muscle is healthy and strong. I told the cardiologist I am built and look like an OX! She laughed.  I had an ultrasound for the kidney and it too is clear. All of this horrific pain and suffering was from my not speaking up and getting off the Humira faster. I usually do a lot of research on each and every drug and vitamin I take. I did not check on Humira because I wanted to not be predisposed to the idea of side effects. This time I should have. There is clear clinical documentation of cardiac issues brought on by Humira. I was heading for a heart attack.

I am feeling so much better as the drug leaves my system. I just saw the PCP again because the blood work was still going down. He was concerned this time. He put me on iron and gave me a  B12 shot.  Finally.

My whole point of writing this long blog is for those who sit back and do not fight for the treatment you need. Everyone is different. I know many people who have issues with Enbrel. I had none for many years. Do not let the system kill you. If you something is not right, speak up to your Dr. They are not mind readers. If you say you feel like crap, explain it well so they can help. One thing I did not mention was I also requested lab work done monthly. I have to go anyways for my INR so I requested they add a CBC and other tests.  That was how I proved that there was a decline in my blood levels and a sharp decrease in kidney function indicating a problem. It was not enough to say I was tired and was peeing every two seconds. My reheumy added his tests and they indicated that my SED and CRP rates were extremely high indicating inflammation. My pain was truly getting worse. When you think about it, on average, a doctor has about twenty minutes to assess how things are (if you have a good doctor). Without your input, they have to go on what they know in general. Help them help you and do not worry about “what are they going to think?” They are going to think you are smart.

 

 

 

 

 

Trauma informed

little girl

I have spent a great deal in the past months seeing a variety of doctors for various reasons. At every visit, every time, the patient care-tech brings me back to the visiting room to wait for the doctor. It is their responsibility to weigh, check blood pressure and ask a few questions. One of those questions is the medical community’s answer to being trauma informed. It misses by a huge mark.

Being trauma informed simply means being sensitive to a patient’s history or the possibility of the patient being in a dangerous living situation. We are talking domestic violence, and all forms of abuse: mental, physical and sexual at any age. Being a trauma informed  means everyone on your team from the receptionist to the doctor is sensitive to how they treat a patient. Some may say this is over the top but the concept is very important to the true wellness of all patients.

For example, the patient who keeps coming back with bruises or injuries from falls. Very suspicious if the patient is only forty. Maybe not so for someone who is eighty. But in the case of the eighty year old, she or he may have a care giver who has been frustrated in having to provide care and pushes them to make them move faster, or hits them when they spill things. And the patient is not going to do anything about it because the next step is being forced into a nursing home. They are living in an abusive home and are trapped. They certainly are not going to be forth coming about it.

Patients who have experienced domestic violence of any form will react differently to the way someone approaches their safety bubble. What I mean by this is that everyone has a comfort zone for how close people can get and how comfortable they are being touched. Some people are huggers and touchers and love to get close to anyone, including a stranger. People who have been abused have much larger safety zones and very often do not want to be touched. This not wanting to be touched can range from the patient being able to tolerate it by disassociation or the patient who has a panic attack at the mere thought of having to be touched, which often leads them to not go to the doctor when they really need to.

It an attempt to becoming trauma informed, our local medical center has all providers asking about the safety of their patients? It is a useless attempt to meet a standard. First of all, it is not the doctor who asks this question. It is the care-tech, the gum chewing little twenty-something who is trying to beat a record of some kind by seeing how fast she can get patients in the rooms ready for the doctor. They change regularly and even so, I doubt highly any patient who is in a domestic violence situation is going to open up to that individual as if they are going to be able to do anything. AND… it is none of their business. The lack of sensitivity to the situation of an actual abuse situation is very typical. Unless there has been some form of specific training done with people who are asking that question, simply asking the question almost makes it worse. What are they going to do if a patient says, “no I am not safe. My husband routinely comes home drunk and beats the shit out of me and then rapes me.” The response to that can make or break the patient. The care-tech’s only course of action would be to type ABUSED into the chart. That works!

I would love to know how asking this question, “do you feel safe in your living environment” is the proper opening for a patient to disclose something so humiliating and degrading as being abused. And how many providers are even trained to handle the situation past the physical? Do they know who in the community is providing help for domestic violence? But the bottom line, most patients will not jeopardize themselves by spilling the beans about their crappy home life in a brief visit to a doctor, especially if there is not a relationship built over time with that doctor.

But being trauma informed goes beyond asking that inane question. It is things like how the patient is treated by everyone; from the rushed handling of the care-tech to the actual doctor. Patients who are victims of abuse will react from the way they are placed in a room and then left abruptly to wait for an extended period for the doctor. Letting the patients know if the doctor is running late, or checking in on the patient to see if they are ok would go much further to calm a nervous person. Having the doctor explain what and why they are going to do something BEFORE doing it will help also. Even the simple act of having them listen to the heart can be traumatic. Some doctors will do it over clothes, some doctors reach right in without warning for skin contact. Sometimes there may be a need to hold the patients head while examining their throat for example. This simple act can terrify someone who has had their head restrained in an abusive act such as forced oral sex. Lying down on an examining table makes anyone vulnerable, but for an abused patient, it is excruciating.

For some patients, the act of disrobing will send them back to a place of past abuse. These patients need a sense of safety which throwing them into a sterile, brightly lit room and demanding they disrobe behind a flimsy curtain does not provide. Then they have to sit in anticipation of being probed on a ridiculous scary examining table sitting in the middle of the room as if they were a piece of meat shivering in a paper gown. Would it be so absolutely terrible to provide a soft blanket to comfort and to also help with limiting the exposure while being examined? Something that simple is being trauma informed.

The patient is brought back to the exam room and sat down after being weighed. For some, being weighed is very traumatic. I know that doctors need the vitals but unless you are suspicious of your patients and do not trust them, can you not simply ask them what they weigh? Or make it part of the exam in private and not in a hallway where everyone is walking by. The scale calculates and the care-tech yells out the reading like everyone needs to know….and you still have your boots on. I skip it and refuse. Unless I am there for weight related issues, I know what I weigh and I will tell the doctor if they ask.

Health care workers are highly trained. But in the area of trauma informed, there is much to learn. This study goes hand in hand with a comprehension of the ACE study, which identified the link of abuse to chronic illnesses. I have asked all the doctors who I see if they are aware of the ACE study, and none of them are. I am going to leave a couple of articles for them to read. (see below) We need to work on this information being disseminated and so if you found this helpful, read and print these out and give them to your doctors.

Ace study: http://www.ajpmonline.org/article/S0749-3797%2898%2900017-8/fulltext

PDF of journal article: http://www.ajpmonline.org/article/S0749-3797(98)00017-8/pdf

https://acestoohigh.com/2017/01/05/dear-doctor-a-letter-from-a-survivor-of-sexual-trauma-to-all-medical-professionals/

https://acestoohigh.com/2016/08/10/childhood-trauma-leads-to-lifelong-chronic-illness-so-why-isnt-the-medical-community-helping-patients/