A journal of healing

Posts tagged ‘health care’

I did it!

I did it. I left my job. I “retired.” It has been a tumultuous month getting prepared for the last day. It came and went with a whimper. My body reacted far more than my mind. In my head, I kept feeling like I was going on vacation. Not even on the last day when I packed the light that has been on my desk for 6.5 years  did I feel like it was a permanent situation. Handing in my badge was emotional however. That has been my identity for so long. “Employee” “Director.” Now what am I?

I am relieved. It is hard to explain how much physically different my body feels. I have been living in terror for so long and the last month was even more so, if that is possible. When you have PTSD, your body takes over and reacts without your thoughts. I was a knot of tension which got worse until the last day. My stomach ached, my blood pressure was way up and my chest was tight all the time. My normal aches and pains were heightened. I did not sleep. I was a mess.

But my Spirit guides showed me that the path to leave was the right choice by showing me a glimpse of the future. I left turmoil and a toxic environment that was only going to get worse.

One by one, my employees came to me to tell me their plans for the future. One has a sick mother and will probably be taking FLMA and the new extended paid FLMA is the spring. She already asked for two weeks in February to make plans. Another one wants to go back to her family in Africa where she has a sick sister. She too is planning on using FLMA to scope things out in the early summer and then leave later this year.

They never hired the new clinical education manager. Now, they are so desperate, they may promote the girl I hired to be the Educator. I hope they do that as at least she has an idea of what is going on. When I resigned, the VP redid her job, and took away most of the responsibilities that made the job challenging and interesting. If they keep her at the position, she will walk. She wants to grow in her career, not go backwards. The Lead Preceptor is still on limited restrictions and only working five hours a day when she can. She detests the VP and will go back to field if he messes with her.

But the final conflict was with the part time paraprofessional trainer I hired last year. She was a pain in the ass from day one. She wanted more hours. She did as she wanted. She did not follow regulations when it came to training. It was a tough job to fill and so many times I looked the other way on certain things. But I knew she was a liar because she got caught in lies so many times. What made her lies so hard to comprehend was that her other job is a Pastor of a Church, unless that is a lie too. The last straw was her timesheet the week after Christmas. She marked herself in an hour and half sooner than when I know she was there. I had four people looking for her on this day who all said she showed up at 1:30. She marked she was in at noon. I went back and pulled her timesheets for six months and matched them up to her badge swipes and there were huge discrepancies. We have to swipe to get into the buildings. I never trusted her time, but I did not think she was padding her timesheet as much as she was. And it is hard to prove because I was not in the same building as she was so I never knew for sure when she came in. But this was fraud and I had witnesses. I had to fire her.  The stress of this was terrible. But somehow she got wind of it or knew her performance was terrible and resigned on this past Wednesday. I was so relieved because she is very unstable and firing her might have been very dramatic and possibly violent.

There was so much else going on during all this. I left a mess that was only going to get worse in time. The new regulations coming out governing the way home care agencies do business are ridiculous. The amount of documentation that the clinicians are going to have to do is extraordinary. It will be too much for some and they will go back to the hospitals, where there is much less documentation. The insurance companies are building in requirements that are so restrictive in order to deny payments when they are not met. Much of the work that was done in the last two year at the agency has come unraveled. The big Lean projects designed to correct money issues are collapsing due to lack of oversight. Since June, the agency has lost even more money that they did the previous two years and will be at an all-time new low as far as meeting the budget. They will lose over 5 million this year. It will mean even more layoffs with a support staff that is extremely limited. They already canned one Administrator. The “Mothership” will be replacing higher positions with their personnel and absorbing more of the support roles. That has already started. They will never shut them down, but they will run the agency.

But through all this, I came to realize that I was not cut out for the tension and back stabbing anymore. I also do not like the “new” workforce. I had to train this young chicky who is the golden child of the VP I worked for. She is the typical young spoiled child in her late twenties. One day when I was training her on a training system we use, she was slumped across my desk with her head in her hand yawing in my face. This lack of respect display was only heightened by her continually picking up her phone to check something and text. How much do you think I really showed her? Good luck! On the last day, she was panicking because the VP asked her to pull a report and she had no clue as what to do. The three of us had to meet and I did explain it again to her in front of the VP.  I will not miss that crap at all.

I will not miss the hurry up and do something only to have it not used or forgotten. I think of all the stupid busy work that I was requested to do by the rotten VP only to have him move on to something else. I think of all the finger pointing and the excuses and blame. I will not miss that. Did I just get old and was this crap always there?

The firing of the part time instructor caused a huge issue. She was also the train the trainer, and instructor for the agency’s CPR program. By regulation, we have to have some of our staff CPR trained. The same chicky who was so bored during her training with me was to be trained as a new instructor and to take over the oversight of the program when I left. She missed her training (three times) and so was not certified. I was leaving them without an instructor in CPR. This caused me great worry. She could give a crap.

I finally figured it out. Her generation was raised, and especially her because she was an only child of elderly parents, that she never had to resolve anything in her life. Someone else always has fixed it or she just didn’t care. I have seen this behavior in so many 20 and 30 year olds. I was raised to take responsibility seriously. I took it to an extreme where it was physically harming me.

This lack of concern is apparent in the quality of documentation performed by the clinicians. I see it in young managers who cannot deal with conflict and go running immediately to their superior. I see the degradation of leadership where the “what-ever” attitude is beginning to permeate. This is not an arena I am comfortable in. I want to work with people who give a shit and take it to heart when they are in charge. I cannot abide the cocksure attitude of children who think they know everything until they are put to the test and then point fingers at others in their failure. I see it our training rooms where people are looking at cell phones instead of absorbing the lessons that will make them successful. What is even scarier is the increase in errors in medical practice. Very scary. My favorite horror story is where some packed a sacral wound only to discover it was the person’s anus they packed.

I know too much. I know what has been buried. I sat too long on boards that over saw the discrepancies and issues that were harming patients as well as the agency. I am no longer able to tolerate the lack of concern and I know I was not the only one. I was the last of the senior staff that was with me from the day I got hired.  We called ourselves the Brain Trust and we were powerful and passionate about our jobs.  They all have left or retired.

Smugly, it pleases me that it will take two new directors and two new managers to do my “job”.

The only thing I am in charge of now is me.  I think I am in a good place finally.

 

 

 

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Pulling the trigger

I pulled the trigger. I started the timer. I made a difficult decision with no going back. I put in my papers to retire. It still has not hit me that in three weeks, I will not be working. It was not as easy a decision as one would think because it is so final. But it is done!

I have worked my entire adult life. I actually started working as a nanny and babysitter when I was only 11. I worked summers until I was 15 and then went to work in retail. I never stopped working. In 1986, I was downsized and worked on my house for four months. I got up every day and painted, scraped and papered. Again in 2002, I spent three months doing the same thing on this house while I looked for a new job. Looking for a new job is a fulltime job in itself.

But this time, it was on my terms to leave and I am not going to another job, nor am I going to go crazy looking for another job. I am being careful not to say I won’t ever work again, because I am not sure of that. I plan on spending the next few months in an effort to clean out this house and that is going to be a lot of work all in itself. I also will not have to drive in the snow and I can take naps.

The stress of working in healthcare is not for the week of heart. There are so many regulatory changes coming down that it makes it almost impossible for an agency to be successful. The agency I work(ed) for has not prepared for the new requirements that need to be trained and enforced in less than a month. The agency lost over 4.7 million dollars so far this year. They are bragging because it was less than the 5.2 million they lost last year, but they have not done the year end and I am sure it will be just as bad. They fired one executive in an attempt to lower their costs two weeks ago. “She was paid way more than she was worth.”

I oversaw three big divisions of the agency. When I started, I only had two. One was a brand new division. Then I got another one and now, I have to laugh, they are going to divide my work load back amongst three people. That makes me smile. But what is even better is that these three treated me like crap. They are young and on the rise in the agency. Now that they are seeing the workload and responsibilities, they are my best friends and so super sweet. Gack! One of them has a millennial ego and was so cock sure she would be able to do a better job. Now that she is seeing it for what it is, she has set up four training sessions with me to “learn my job.” Ha…. If she thinks she is going to get my years of being in organizational development in a few meetings, she is sorely mistaken.

I am also leaving after 36 years of being an educator. They all think being an educator is just standing up in front of people and delivering lessons. The VP of Clinical thinks that creating courses in the on line training system I implemented is just data input. OH, you have no idea how that statement tweaked me. “Yes, that is why I have a Masters in instruction technology because it is just data entry.” Jerk. I am not teaching anyone how to do that. “Go to school and get in debt like I did to learn that.” I am not teaching any little shit in an afternoon what took me a Masters and eleven years of working in the technology to become proficient.

Do I sound bitter? Yes, in a way I am. The weight and value they put on people, and not just me, is hard to take. The VP also made a bold statement that “the only way to change a culture of an organization is to get rid of anyone with twenty or more years of experience.” I wonder if John Kotter would agree. Systematically all the senior people are leaving or have left. They made it so uncomfortable for several senior nurses they went to the competition. My Clinical Educator left in October after twenty-seven years with the agency. They have fired two executives and three directors in the last two of years. I was the oldest in age director left. They have replaced the positions with people from the Med Center. It is a matter of time before the Med Center replaces all the support departments to save money.

My only regret is for my team who has been divvied up. My Education Coordinator is the one I worry about the most. She is going to the new manager with the ego and no experience. My EC needs a lot of hand holding and this young chicky is not going to be able to deal with her. I worry because she is even older than I am, but enjoys her job and is not ready to retire. I give her six months before she changes her mind and leaves.

My original plan was to wait until I was 65 to go. I am leaving a year earlier. But things financially came into place and so why wait. I am not sure I could have gone through another year of the crap and BS. I know I could not. It was making me very sick. I was not sleeping. I worried constantly. I worked constantly. (Wait until these three replacements see the hours it takes to make things run smoothly… HA!) My health was getting very bad. My doctors recommended me to retire and destress. No amount of mindfulness or meditation could resolve the crap I was facing.

Maybe I am too old!  I just know that I want something I have never had in my life ever.

Peace.

 

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.

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.