A journal of healing

Archive for the ‘suffering’ Category

Trapped

Last week, it was a beautiful Sunday and I sat out and enjoyed the sunshine and animals in my garden. I took a lot of pictures and it was my intent to post them this morning. I am not up to it. This morning is grey and humid with pending storms all day. It matches my feelings perfect. I have never been a person who stays depressed for long, but lately, I cannot get out my funk. And the cause is my job. Last week was bad news after bad news. It is so hard to be positive when you are trapped in an environment of … I am not sure if I have the word, but YUCK will do.

To start with, the building I worked in is filthy, suffocating and inadequate. We out grew it five years ago. It was a retail building with high ceilings. They added the second floor, and then added ventilation, which has not worked well since they put it in. It was 90 in some areas last week. Everyone has fans running. Because my office is not an office, but alcove that was sequestered off with cabinets, there is no air. NONE. I currently have four fans running in my office and I call it the wind tunnel. There are three small desk type fans and one floor fan. Within an hour of being in my office, I have a headache from the constant dust being blown in my face coupled with the mold that is everywhere.

The added air conditioner is located on the roof over one of the training rooms and it broke. It was leaking so bad that is was coming through the ceiling in the hallway upstairs. It has been like this all summer. The humidity coupled with the water dripping makes it like we work in a plastic bag. The training room was so hot, brand new orientees were getting sick in orientation last week. You have to yell in the room because we have a large fan in there and the broken air conditioning unit was cycling off and on every two minutes. We all have had hopes that this was not going to be forever because they, the Med Center and our Admin, where looking for a new building. They had a site and even drew up plans. I got to design the training facility. Well, that fell through and we were all told on Monday. It was going to cost too much and there was no money. The agency has already lost 1.2 million dollars for the first quarter.

Last week, I had a terrible thing happen to me. This building was not set up for the number of folks who work there. It was at one time a car showroom. Ten toilets total in the whole building. All but two are on opposite side of the building. Two of them are right by my “office.” EVERYONE now wants to use these two. When I first started, we only had five men in the building. Now there are many more and they have to use these two. And they think they are their private reading rooms. I had a situation where all of a sudden, I knew I was in need. I raced down to the private ones and they were both filled. So I had to “run” to the other side of the building. I cannot walk somedays let alone run. Well, I did not make it. I messed really bad all over the bathroom and myself. My medication makes me have a huge issue with explosive poop. I won’t share all the details but someone did come in and saw the mess, which I cleaned up. Even now I am so embarrassed and traumatized by this. Now I panic every time I have to go to the bathroom. You cannot believe how stressful this is.

Monday was the start of a fantastic new staff member on my team. She rounds out a position that was not replaced when I promoted the nurse in the Lead Preceptor position to Nurse Educator. The new Preceptor is wonderful and I have been fighting to get her in my department for eight months. Clinical wanted her under their rule. My boss finally won the battle but there is more to this. She was doing great for her first week. Then on Thursday night, I get a text from her that she has been in a car accident and was going to the hospital. I texted with her through the evening. She will be fine, but she was pretty banged up and sore the next two days. I am hoping she will not have on going problems since she hit her head and they said she has a concussion. She tried to work on Friday but was still dazed and dizzy.

On Tuesday, my boss was pissed because of an issue with a committee I co-lead. I felt betrayed because someone I felt close to had gone to her and complained about a situation and fueled this big mess. It was so not necessary. But I got the brunt of it and I was hurt this person did this.

We have this pompous ass who is our VP of Clinical. He thinks he is running the agency. He wants control of everything, especially education. I liked him when he first started under three years ago. But then he systematically got rid of people who have been with the agency a long time. One director who reported to him directly was termed after 31 years. He pushed for another director to be removed who had 42 years. She did something stupid and that was his ticket to remove her. He has ostracized me from whatever he can. I have been telling my boss about stuff he has done to the Education team since he began. Well, something came up and I do not know what, but there was this big initiative to make an allegiance between clinical, quality and education.

She told me that she finally saw how I have been treated and ostracized. I have only been complaining about it for the last three years. And since nothing ever was done about it, I pulled back and focused on my new responsibility of the Aide training program. Meanwhile, I was being left out from many committees and projects. There is way more to this but the result was this pact was drawn up by the administrators of the departments and had the attention of the CEO. Why now, I ask myself. Because I think the VP of clinical was trying to get rid of me. He wants in the worse way to put education under his darling quality director, who he just promoted last year. This is a whole other WTF situation. But something happened that I do not know what it was but my empathetic feelings are that he had a rope for me.

Well, nothing has changed except I did get my preceptor. So Thursday, my boss drafted this email that I had to send out that was sort of humiliating. It stated that Education needed to partner with people and that the directors that the email went to were to include Education in their projects. I had her change from using Jane to using Education as the team so it was not so personally humiliating. It makes me feel like the red-headed step child that the kids are being told to play nice with me. They don’t and they won’t. I am not a clinician and hence I KNOW NOTHING.

But I always had my Nurse Educator to rely on. The fact that most people differ to her used to bother me. It is so blatant because these people are the rudest, nastiest people ever. But she does know her stuff. We work fabulously together. I actually have the dream team now. Or should I say had. She resigned on Friday. Twenty-five years with the agency and she will be gone in October. She and her husband are moving out of the area to begin their dream careers as co-pastors of a small church. They both just completed their Masters in Divinity and I knew this was the plan…eventually.

To say I am screwed is not really the scope of the situation. The agency is screwed. She is the most knowledgeable person left in the agency. The VP of Clinical has pushed all the “old broads” out and so now, there is no one left with the history and clinical knowledge that she has. She started as an aid and was in the field for years. She had only been teaching for about a year when I started and only one class. We worked together to build the caliber of our training to the status that it has. She teaches now all the big clinical classes. She sits on a few committees. But two years ago, she headed up a major project about our EMR and medications. The VP of Clinical treated her (and me) like we were leapers. He demanded we do this, but then abdicated from the project and left us swinging… which totally frustrated my Educator to the point she was going to quit then. Then she heard through the grapevine that he told someone she was resistant to change and hard to work with. He had a rope for her too.  I knew it would expedite her finding a new job. Her loyalty to the agency was gone.

The depth of the impact of this is wiping me out. I do have a solution but it will impact everything I did on the aide program this past year. But not having the right educator in this role will impact the agency more. I am afraid they are not going to allow me to make this decision and that this may open up a new mess with the friggin VP demanding he rule education and he puts who he wants in there.

I am so done with all this. I love the work that I do. I hate the drama. I really do not like working in the Health field anymore. It is more than I can deal with. The stupidity of eliminating the old, seasoned people has truly bit them in the ass. There is only one seasoned nurse left. Last year, the VP told me he was gunning for her. She has 40 years there and he has pushed her so much, she is retiring at the end of the summer. But this past year, she has been out more than in because she has so much PTO. They have brought up these young people with no mentors to guide them and they are destroying the agency.

And…. Since the Med Center owns us, they have been putting more of their employees in place. The writing is on the wall that they will eventually absorb all the support departments. That won’t happen before I am out of there, however. But they are not going to invest in us or those departments. They are not going to bail us out of our building, even though they, the Med Center, are building everywhere in the area. Being stuck in that building is causing me physical issues.  If we keep losing so much money, I am not sure what the Med Center will do. They need us, but they could take over and run it much more efficiently.

It is time for me to go. It has been time for a long while. This was just a few of the things going on and this was just last week. There are a lot more issues, way more. My physical situation is not going to get better but I do not need to hasten my decline with the stress this is causing me. I know I want to keep working. I want to have a remote job that will include good health insurance. I have started the hunt. But the lack of insurance and losing the income right now has me trapped.

 

 

 

 

Everyday hero

Cubid

There are few instances of people nowadays that are in my life that I would say are heroes or at least the bravest people I know. But I have been blessed to have someone in my life right now who I would call a hero. She works with me and at first; we did not hit it off. But as time has gone on, we have become work friends.

This woman does not see herself as anything but just getting along in life. Many years ago, when her three boys were little, her husband made a left turn into an intersection on his motorcycle. He died because someone did not see him. She rarely talks about it. I did not find out the whole story until recently when she was telling me it would have been her 40th wedding anniversary. She never remarried. She dated rarely and only after her boys were grown and on their own.

She is our recruiter for professional staff. I was not hired by her. She was out having surgery on her leg. A few years back she had been trying to open her garage door manually when the power was out and the rope gave way and sent her flying. She shattered her leg and hip. She was out having the pins redone as they had worked loose and were hurting her. When she came back, she was a bit cold to me. I did not realize that she feels possessive over her hires like a mother but I was not part of her flock. It took a while to break down the wall.

I found out that she also has ovarian cancer. I took great effort to make time every day to see how she was doing. As we got to know each other, she would inquire about my health. Turns out one of her sons has rheumatoid arthritis as did her husband. She was very concerned about the drugs I was on and the reactions I was having. She listened authentically to my concerns. She would always say, “Well, hang in there.”

I am not sure what or when, but we became pretty close. She would come to me when work was getting to her. Not much really got to her, but the pettiness of work really did. She does not like everyone in the HR department and shares her feelings about the inequities she sees. She has been doing her job for many years and is very good at what she does.

But then she would tell me of her journey with her cancer. She bravely faced infusions of chemo last year every four and then two weeks. It was killing her. She never wavered though and other than sharing with me and two other girls who were cancer survivors, she kept it to herself. Her doctor wanted her out of work but she persevered and kept working. There were days when she would walk all the way downstairs, back and forth with candidates who she was interviewing. She told me her bones hurt her so bad from the chemo that the first thing she did when she got home was take an oxycodone. She lives alone with her dog Jethro who she cherishes.

Every day she could make it in, she was as pleasant and helpful to new people as she always is. To look at her, you would never know the severe pain and misery she was going through. She would always ask how I was and I stopped complaining about anything. What I face is nothing in comparison to her journey.

About a month ago, they stopped the chemo. Her doctor told her it is going to kill her faster than the cancer. They also discover new cancer cells in her chest. The doctor feels he can surgically remove what they see. From then, they will start a new program with her of less aggressive chemo. She goes under the knife next week. We took her out for lunch this Friday as a treat and to bolster her. I think it was more for us.

There are very few people I know who are as brave as she is. She always is concerned for others. She asks little of her family and of us. But we all are there for her. So if you read this, I am asking that you take a moment and send my friend some healing energy. And then be grateful for your wellbeing.

Death is not for sissies.

fogfalls

Death is not for sissies. This past week was an experience I would not want to repeat. There were moments of beauty and love that will be in my heart forever. But watching someone die is not something I want to do again. Now I know that I will not partake in Hospice work as a volunteer, even though I am trained to do so.

My mother in law (MIL) spent over a week in the hospital. The family dynamics made it a difficult situation. The oldest son wanted control of his parent’s estate and health proxy, but it was given to my sister in law (SIL). My hubby is the middle child and always on the outside looking in. There were arguments that were nothing but my BIL and SIL battling for control.

My MIL was admitted for aspirated pneumonia. She had dementia. She has spent the last couple of years in and out of the hospital and was placed into a nursing home. The place she was in was depressing and ugly. It was close and convenient for my SIL to go to. Mom was kept pretty much in a wheelchair when not in a tiny half room. My SIL moved her out of her private room and told no one. After my father in law passed last September, the family splintered as the SIL was totally in charge of the estate and money and what happened to Mom.

From the moment Mom was in ED, my SIL thought there was hope she would recover completely. She took measures to keep her alive that she should not have. The Wednesday after she was admitted, the charge nurse on the floor pleaded with her to allow her to go into comfort care and be released from her illness. They were suctioning her, giving her nebulizer treatments and she was sustained on high power oxygen. She could not eat. They were giving her mega doses of potassium IV and antibiotics. Her infection stopped spreading, but it did not get better.

Finally, on day six, my SIL agreed to comfort care. BUT….she did not want them giving my MIL any morphine. She felt that was what killed my father in law. Long story but the bottom line is my SIL is very selfish and undereducated and once she gets an idea in her head, there is no changing it. She named the one insistent nurse: Nurse Kevorkian. And she was very upset with the fact that Mom got a variety of nurses, care technicians and PA’s. She hated the PA’s and was quite rude to them. The MD assigned to Mom said she would not make it from day one, but agreed to let my SIL decide when to go to comfort care. Then she liked him.

Finally on day six, she signed Mom over to comfort care, they wanted to immediately removed the IV. My SIL almost changed her mind accept that it was explained to her that it was painful and not doing anything. It took another day for her to agree to have the line removed. She did not want the O2 turned down or changed to normal. The staff, fortunately, have to followed protocol and when we left at night they took her off the high pressure and put her on a very low dose of 02. Mom hated the cannula and pulled it off her face. SIL kept fighting with her to put it back on. When I felt it, I told her there was barely anything coming through and I said to her, “Let’s leave it off for a while.”

But the hardest thing for SIL to understand was the course of medications they give the dying. She kept saying no to anything but they did medicate her. They told her the morphine (they used the name of the drug and not the word morphine in front of her) they were giving her was helping her breath, so she let them administer it. Mom became very agitated and they wanted to give her Ativan to calm her. They tried to give her a pill which of course she could not swallow. But when they came back to give her the Ativan sublingually, SIL had a fit. That made no sense because she was OK with the pill of the same drug. For three hours Mom thrashed about.

But she did drink a sip of water when they tried to give her the pill. My SIL went off the deep end and said she could finally eat and ordered food. They brought trays up of pureed foods which of course she did not eat. But she offered to her son when he was visiting.

Mom spent the next couple of days in and out of it. She would call for Clara. She would smile at me when I leaned over. She knew us. And then the last day, she was totally out of it. She was talking to whoever she saw in her “sleep”. She made hand gestures that indicated that there were people in the room for her. We could not understand her because she often switched to French, which is her native tongue. She would hold out her arm, her fingers grasping for someone. At one point she made the gesture of “you and me” and then smiled. But there were many moments of anguish and pain as her face contorted in a painful grimace. Her body would become rigid and she tried to sit up. She had longer pauses between breaths (apnea) and then would shutter and take the next breath. Her toes were a curled mess. She suffered the indignity of being rolled in the bed to get cleaned up and left for hours in uncomfortable positions when she slipped in the bed. Before they put her on comfort care, she would moan. I never understood how my SIL was not bothered by that.

I was angry at my SIL for allowing my MIL to suffer. The nursing staff was very nice and they would talk to me instead of my SIL because she was so rude to them. They knew not to say anything about drugs in front of her. They would tell me her stats and were very upfront with me. After being there from 9 am on Wednesday, I asked the nurse if she would make it through the night and she felt she would. Although her O2 level was fluctuating, it was rebounding back to 90. We left, my BIL left and then at 9, my SIL left to go home for the night. Mom was sleeping quietly and we all thought she would be there the next day. At 10:15pm, all alone, she crossed over. Eight days and nights of being by her bed and she still died alone. I think she knew my SIL would have freaked.

The next phased of drama is the service and funeral. We talked about the planning of it front of my MIL every day prior to her death. My SIL was going through menus and calling places. One night, she and my hubby wrote the obit and talked about it very loudly in front of my MIL. Then, the next day, she said no more talking like that in front of Mom. She had Googled it and said she found out Mom could hear. I told her that from day one, but what did I know? No matter what anyone said, my SIL wanted what she wanted and that is what would happen. I do not care as I do not believe in big elaborate funerals. Spend the time and money when the person is alive. But at the end of the month, there will be a memorial service and funeral.

Now, the real battle starts as the accounting of the estate will take place and my SIL is going to have a lot of explaining to do. Can’t wait.

 

 

 

 

Imminent death

Cubid

Last Tuesday, we got a frantic call from my sister-in-law (SIL) that my Mother in law (MIL) was admitted to the hospital with pneumonia. She was in the ED and not doing well. My MIL is 91. My husband and I left work and headed over there.

The poor woman was in terrible shape. She could not breath, was very agitated, had a fever and was dehydrated. My MIL had been in hospice once before, but now was under comfort care, which my SIL had agreed to. Under comfort care, they do not do anything to prevent death, other than make someone comfortable. In the ED, my SIL did a 180 and had them do whatever they could for my MIL in the hospital. She was even agreeing to intubation if needed.

My in laws both had very well written advance directives and MOLST saying they did not want any intervention that would mechanically support their lives. My FIL had actually signed himself into hospice when he knew the end was near.

The issue is that my SIL has total control. She is her health proxy. This has been a source of consternation for her oldest brother who wants total control of everything. Over the death of their father, the wound widened and I do not think it will be ever resolved between the two of them.

Meanwhile, my MIL is on high pressure oxygen, nothing by mouth, and is hooked up to IV’s. We were told on Wednesday night to consider comfort care as her time was short. My SIL refused. They continued with nebulizer treatments and suction up until Friday when they said they would no longer provide suction other than in her mouth. They had been shoving tubes down her to help her clear out. She has dementia and is incoherent most of the time. Thursday, she was out of it all day. My SIL said she was just sleeping, but no one could get her to “wake up.” The staff was pleaded with her to change her level and release her. My SIL kept saying “what did they know?”

Yesterday was the day she had agreed to sign her over. We all went to the hospital, including two grandchildren. We spent the morning at the funeral home planning her funeral. When we got to her room, she was more coherent and was telling all of us to enjoy our lives. She told us to take vacations and be happy. It was hard to understand her so her granddaughter decided to be translator. I believe she was embellishing her comments a bit. We had a priest come in and do last rites. After that, she seemed calmer and would come and go. She kept looking for her husband and brother, both passed.

However, my SIL reneged on her agreement and said she was not going to put her in comfort care. She said she likened it to putting a dog down. The MD stopped by and said that he did not think she was in pain and another 24 hours would not make a difference. She took those words as to she was getting better.

They have been very clear to all of us that Mom will never come off the high pressure O2. She is at the highest setting. Since she is on that, she will never eat through her mouth. She is wasting away. I am waiting for my SIL to agree to a feeding tube and then all hell will break out. Her potassium was so low, her toes were a curled knot. I have had toes cramps and they hurt badly. They are passing mega doses of potassium via IV and they said they cannot keep doing that, either. She has aspirated pneumonia which means she choked on something. They also discovered she had a heart attack, possibly when she choked. Her infection has not improved, but also has not gotten worse, which my SIL is taking as sign of recovery. She is so weak and is wasting away.

I love my mother in law. I have only known her for thirteen years. When she started with the dementia, they moved here from Florida. At family gatherings, she was often quiet or nasty. She would change when I was alone with her and was always sweet, even when she repeated herself over and over. My SIL never stayed with her over night for all the times we needed it when my FIL was sick. I did. Even now, she smiles at me when she is awake. Yesterday was weird because she did not know my BIL’s wife even though they have been married for almost thirty years. They, my MIL and other SIL,  have not gotten along for many years, stemming from issues my  SIL caused. However, yesterday she knew me and was asking for me. That did not help with the hard feelings.

It has been a long week. I am spending my days and evenings with my SIL and MIL. They restrained her as she keeps trying to pull everything off of her. I take that as her way of saying “let me go!” The only time they would allow her off of them is if my SIL and I are both in the room. They put them back on when it is just my SIL. I have been doing touch therapy and it helps to calm her down. My SIL is rude to the care team. I am not and I am asking the right questions. A couple of them know who I am as they have worked with me at URMHC. In my own world, I am way past due for my Humira for my PSA and I cannot take it and go to the hospital. It lowers my immune system and that would be like an invitation for me to get sick. So my own pain level is through the roof and I am gimping pretty badly. But I get to go home at night and my MIL will never, so I buck up.

I understand the decision my SIL has to make is hard. But she is disregarding what Mom wanted completely. This has pissed off my brother-in- law and his wife to no end. It is very uncomfortable when they are around which has not been too often. Somehow, they are pissed at my husband and I as we are trying to not get into the fray and keep our mouths shut. My poor husband has been an family outcast most of his life, partially his doing and partially because he is so neutral when it comes to family issues. They love drama.

I put my Mom into Hospice when she had cancer and made preparations to bring her home to die. She died that night. I was 23 years old. It is a long story why the decision was mine. My other SIL had to do the same thing for her mother a few years ago. It was not an easy decision for either one of us to make, but in the best interests of our mothers, we made it. I get that there is always the concern about such a decision; the what if?

I am hoping today my SIL will do the right thing. They will give her morphine and turn down the O2. I honestly think it will be quick and I hope not too dramatic. When we left yesterday, my SIL said, “I wish she would just fall asleep and go.” She does not equate the high pressure O2 as what is keeping her alive. But, my SIL is not the brightest bulb I have discovered.

My BIL said something so cruel that I was stunned the other day. He said, “Mom chose her to take care of her and so now she is getting exactly what she deserves.” Nice! No one deserves to die like this.

 

Invisible

Penguins

I was very inspired by this post written by Christine Miserandino called the Spoon theory. I thought I would share the concept here and talk about what it is like to have an invisible disease. There are so many people with chronic illness out there.  This is  meant to be  an awareness campaign and to help others maybe understand what it is like.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

To paraphrase the Spoon theory: You are allotted everyday so much energy. Christine in an attempt to help a friend understand what her life is like with lupus tells her by using spoons to represent the amount of energy she has. Before she is out the door to work, she has used up so much energy in showering and dressing that she depletes the 12 spoons by half. She did not address that because of the pain you did not sleep well and so sometimes you do not even have 12 spoons to start with.

She talks about the choices that healthy people get to make about their day because they have unlimited energy. And when I typed the word healthy, I cringed because that is the first choice you lose when you are inflicted with one of the many invisible chronic illnesses that are out there. You do not choose to get this disease.  No one really knows why these chronic illnesses manifest. It can be genetic.. It is a crap shoot. You do not get to choose lupus, Psoriatic Arthritis, or MS and you often cannot prevent it.

Christine explains to her friend that she chooses garments she wears by whether or not she can button them. My choices have to include whether or not my skin is crawling and that the cloth will irritate me all day. Some days I want to get out of my skin, not just my clothes. I have no choice not to shower as I have something called inverse psoriasis, which burns like hell all day if I do not shower and apply medication. But I have to be careful because showering too much activates the regular psoriasis and makes it flare.

I have a friend who I have known for a few years who has chronic pain. She has been to different doctors and they cannot seem to find what is wrong. They are looking for a simple fix. She struggles to explain how one day how she can be really great and the next day feel like someone ran over her. Finally a doctor is going to test for an auto-immune disease and I wish her well.

I used to have days where I could rip through life, do everything I want and then pay for it later or the next day usually in staggering bone deep pain. No one would listen to me either. But they could only see that I was fat and that was the only disease they could see. Doctors are the first and sometime the hardest person to convince that there is something wrong. But be your own advocate. I kept a journal and my handwriting deteriorated so bad because I could not hold a pen. It was not until the progression of my Psoriatic Arthritis (PsA) got so bad that my toes and fingers started to curl up that she ran the SED rate test.

Then by running the required tests, and there are several because it is hard to diagnose, they believed me. Then they filled me with all kinds of drugs which have had dire consequences too.

I am now on a spiral of a pretty bad dive into my PsA. I was in remission for several years until the Enbrel I took stopped working. It took almost a year to realize what happened and to get in to see the rheumatologist. He changed my prescription to Simponi, which took another six months to get and then have an effect. In August, I had a reaction to the drug which raised my blood pressure to stroke level. I had to come off. It took another three months to get in and get a new prescription which I started in November. The Cimzia I took was horrible and raised my blood sugar to over 345 and I gained almost 10 pounds in a month. I am struggling now with getting the weight off and the blood glucose levels down. I am afraid this will make me have diabetes, which is something I have fought off for years. I have to wait until February before I can get in and see the Dr. again. The result is I am in full bore flare all the time. I cannot walk without limping and I have no energy at all. The pain I am in is constant.

I have only touched the tip of what it is like to have a chronic illness. I live with it. I have no choice. I make the best of it by being careful with what I do. Everything I do has a consequence. But I have also try to not let people’s reaction to me affect me. For example, yesterday my family and I went shopping at Costco. It is a huge building with a horrible cement floor. I had to run to the bathroom twice and each time, it was on the opposite side from where we were. By the time we left there, I could hardly walk. I do not use a cane. I wanted to just cry from the pain. I saw people look at me limping and lumbering by and I see the distain in their eyes. They do not see the woman who is in chronic pain, they see a red faced fat being rumpling by them. I would be lying if I said it didn’t bother me. But I do not want the choice to go out taken from me too.

In the spirit of compassion, try to look at other people with understanding that you do not know the whole picture. As much as I hate whining about this, I know there is a need for advocacy for my fellow suffers who have these invisible diseases. Judge not unless you walk the same walk.

The Spoon Theory by Christine Miserandino http://www.butyoudontlooksick.com – See more at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/#sthash.sD7SEFgH.dpuf

 

 

Being controlled

Kitty

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

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

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

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

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

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

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

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

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

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

very close kitty

The Sunset years

sunset

Although the alternative is not what I want, getting older is a bitch. I don’t feel myself aging, but I know I am. I am not sure anyone feels it like they do with a growth spurt at 11. I see the physical changes reflecting in the mirror. However, I think back to my grandmothers when they were my age, and I certainly do not think I look as old as they did. I know I was looking at them with a child’s eyes, but even in photos they looked and dressed so much older. I love the fact that my age is now considered the new forty.

All this thinking is being brought about because of my poor mother-in-law. (MIL)  She is in a nursing home with a broken pelvis and severe dementia. My sister-in-law has finally had her admitted as a hospice patient. She is 91. She has not eaten now in almost 2 weeks but they are giving her a supplemental nutritional beverage. I am not sure if she is consuming that either. She lies in bed and mumbles most of the time. Some days she is a bit more coherent. Other days, like last Wednesday, are terrible. They found her on the floor and no one is confessing as to what happened. She is alone as her three children harbor ill feelings about her, especially her sons. She was not always a nice woman and I will let it go at that.  But still, it is a horrible ending of her life.

In my in-laws situation, they retired at 55. My FIL worked for the post office and they were very frugal. They traveled and lived in Florida until eight years ago when my MIL had breast cancer. They moved up here to be closer to the family, especially their daughter. My FIL was not sick for very long before he passed. My MIL’s dementia progressed rapidly in the last  years and she should have been placed in a memory care facility years ago. My FIL probably would have lived longer, if not happier.

Now, because she is private pay and has money, her options of care are extremely expensive and limited. Believe it or not, she would have better care if she was living with one of her children. But no one would do that. My brother-in-law did take my father -in-law in for his last healthy months this summer. She cannot go to certain hospice facilities because her needs are covered at the nursing home and because of her private money, she does not qualify for a comfort care facility.

My husband is partially retired. I work my ass of at my job and I am not ready to retire but I am also coming to the realization that time runs short. It is true that as you get older, time seems to speed up. We have spent our entire lives saving and creating nest eggs for our old age. WE have pensions and SSI and savings and annuities and stocks. Why? So that when we get old, it will be there for us. That is what THEY told us to do. And if we die tomorrow, all of that will be for naught. It will go to some folks but we will not have enjoyed the fruits of our labor. The thought of it going to pay for ridiculous nursing home costs so I can lay in bed and rot is incomprehensible.

This morning as I was thinking about creating this post I realized that I have been very depressed. The change in the season coupled with having a tough time with my Psoriatic Arthritis symptoms has exacerbated this condition. Seeing my poor MIL deteriorating helplessly and the splintering of my in-laws has not been conducive to making this a pleasant time.

But, the holiday season is upon us and I am the original “Christmas cheese”.  I am not as obnoxious as some, but I do love the season for it lights and decorations and the whole deal. The past years have been marred with forced in-law functions that ceased to be fun many years ago. When I first met my husband, his large Italian family would get together for these big fancy dinners and party. Once my MIL became so ill and nasty, we would all pile into their tiny apartment at the senior living facility. It was miserable. One year, my husband and I spent Christmas Eve with my MIL in the rehab center she was in after she fell for the first time. No one else came.

It is time for me to snap out of it. I want to enjoy this season for a change. This year, we do not have to attend any family functions. We are having a quiet Thanksgiving with just my hubby and my step-daughter. We seemed to have moved to a place on quite contentment now when we are together. We are talking about our holidays together this year with pleasant anticipation.

I am really thinking about my remaining years. It is actually a very stressful stage of life. When do you decide to stop working for retirement and old age? When do you live it? I know I do not want my retirement to be in a hospital in hospice. I think the answer will come but for now, I want to live in celebration of life. I want to hold on to some good times and create pleasant memories because those will be the things that will sustain me in my old age.