A journal of healing

Archive for the ‘disease’ Category

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.

 

August Garden

aug garend 3  The garden is beat up and truthfully, so am I. We have had 90 plus degrees every day (28 days to be exact) and very little if any rain. It finally rained yesterday, right after I watered all the pots. If I knew that was the key to make it rain. Actually, I watered every other night all summer. I also make up buckets of plant food water and give them that. It is a lot of work. And I am tired of it.  I will long for it around January, thinking that the work was no big deal. But the heat and humidity has barred me from sitting out there until much later at night.

aug garden 4 I do not bother with the lawn. If it does not grow we do not have to mow it.  Usually I pop out to the chair around 7:30 after feeding my bunnies, who usually join me around that time.  Petee But with the heat and the bugs, it has not been very fun.  I try not to use bug spray because… well, I am covered with Psoriasis lesions.

This is a whole other thing with this summer.  I am now on my sixth drug in a year. I went from Enbrel (after 8 years it stopped working as they all do)  to Simponi (gave me high blood pressure, like stroke level)  Cimzia (raised my blood sugar to over 400 with one shot) Otezla, the glamour drug at $80.00 a pill (which was the most horrific one of all, I was so sick on it and it made my arthritis worse) to leflunomide, (raised the blood sugar back up there to almost 400) to Humira. I have only had two shots of Humira and it is helping the PsA but not the Psoriasis.

aug garden 5  As beat up as these plants look, so am I. I am grateful for the relief on the arthritis (PsA), but I am a long way from where I was before. I can only walk short distances, and at least I am not crying when I get done grocery shopping. But the lesions are awful and they itch and hurt. My legs and arms and scalp are covered.  But the next thing issue is was something that I have been trying to avoid for the last 8 years.

Diabetes.          aug garden 4  Ever since I was old enough to go to the Doctor, they have tried to make me out to be diabetic because I am fat. Up until they started giving me all these very strong drugs, my blood glucose has been perfect. It never was above 5.5. When I first was truly diagnosed with PsA, they gave me a cocktail of Methotrexate  (MTX), prednisone, and Advil prn. My A1C went to 13 and no one caught it for a while. To bring it down, they gave me Metformin on top of all the other crap. The result was my right kidney failed. They took me off of everything and after a while, my kidney came back to about 41%. The sugar came down but it never has gone back below 6.  Now it is back up to 8 or 8.8 even off the last drug that increased it.  So now I have to take Januvia in the am and a shot of 10 units of insulin at bedtime. Already my morning readings are improved after two shots so I am hopeful we can “jumpstart” my pancreas again. If not, this is a life sentence.   My doctor told me this, thinking it would help: “I had diabetes when I was 29 and I got rid of it by losing 40 pounds.” Well isn’t that ducky? At 29, I did not have any health issues! All this shit started after my divorce when I was 47. But I could go off on a tangent about how trauma affects your health, but I am saving that as I am doing more research on it.

aug garden 1  What is keeping me together is we leave for the River next Sunday. We will be gone for 10 days. We have people staying at the house with the “kids”. They use our house as their vacation spot.

Bro Brow cooling off I am going to try to stay cool, get through this week and go to the one place in the world where I feel safe and grounded. I will have a ton of pictures to share.

Under the Weather

fog and heron

Springtime has finally arrived here. It was gorgeous yesterday and today holds to be even better. My husband is looking forward to hitting the links and chasing a little white ball around. I am hoping to have enough energy to work in the garden.

It is also flu season and there is some nasty stuff out there. I have caught a cold and I am hoping it does not get to be anything more than that. It is unusual for me to have more than one cold a year, but this past winter was an exception. I think the warmer temperatures helped to spread more yuck.

Jan backyard Garden in January 2016

My work is also a breeding ground for germs. We have many people who are out visiting sick people and they come in and spread stuff. Around Christmas, one dietician had something so bad that it took out her whole department. One girl ended up hospitalized. Because we all share the same kitchen and bathroom facilities, it spread across the whole HR and Ed department. I got it.

One lady I work with is over 77 years old and she has been fighting this upper respiratory since January. Another lady who has asthma and bad allergies has just been diagnosed with walking pneumonia.

Louie 1

The University Medical Center  we are connected with is on high alert. They have a break out of a norovirus which is spreading like wildfire. They are sanitizing just about everything. Our facility has a hired out cleaning crew and we are lucky they vacuum.

rhoda 1 2015

The bigger issue is that people do not stay home when they are sick. We have sick time. But people do not want to waste it on colds and other short term illnesses. They hoard it in case something major comes along and they need it for a longer period of time. I can guarantee if I came down with something this weekend, there will be others. Scary factor: we all know hand hygiene and infection control protocols.

I am super glad the weather is improving and I know I will too. Working in my garden and listening to the birds will be the best medicine I can have.

 

Risky business

ashwagandha

If you knew that doing one thing in the hopes of a better situation would automatically cause another difficult situation to occur, would you take the risk. If you take any form of medicine, you do that daily. There is not one chemical drug out there that does not have some risk when you take it. They even put this in writing now on the drug pamphlets that come with the prescribed drugs. “Your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.” Are you willing to take those odds?

Sometimes there is no choice. You have to live with the side effects. I have gone through a series of drugs and have come up with some real doozie side effects. I took a drug and after four days it covered me with painful hives from head to toe. The answer from the doctor was stop taking the drug. But I was taking it to fight off an infection. I have gone through three major biologics and now a pill for my psoriatic arthritis in less than a year and half. I reacted to one with blood pressure readings that were stroke level. “Stop the drug.” The next one put my glucose over 350. “Stop the drug.” The newest one causes incredibly leg cramps. But I am sticking with it because it is helping my arthritis and my skin is clearing. But I only take half a dose.

In my research to find out more about the side effects of the Otezla I started reading about natural remedies. I have always preferred a holistic approach to my wellness. I have dabbled in alternative medicine now for years. I even worked with a homeopath, but got concerned with the lack of certification requirements for that approach. I have participated in energy therapy training. I have been interested in green medicine or herb tinctures for years.

I have been learning about Ayurveda medicine and find it fascinating. There is so much about it that it makes great sense to me. I like that the practice really delves into the body makeup and the whole person from the on-set. I have never had a doctor ask me if I like or tolerate spicy foods. But in Ayurveda, everything about you from the foods you eat, to how you relate to the world is important and part of the symptom management.

What started me looking was the horrendous leg cramps I was getting. I also noticed I had an eye twitch and was experiencing sleep issues. The solution was magnesium. I have been taking 400 mg at night and the leg cramps have all but gone. But I was also waking up in the middle of the night with anxiety attacks and only sleeping for four hours or so and not getting a good night’s sleep. I added melatonin for sleep but I was worried because you are not supposed to take melatonin for long periods of time. I also started to have really bad nightmares.

In my research I came across an herb that is supposed to be a wonder remedy. Everything I have read about this herb is amazing. But I do not go by the ad information; I go to patient user boards and medical evidence based journals. What I find amazing is that this herb and so many have been around for thousands of years. You want to talk about evidence based time studies. We do not have that amount of prescribed time on any man made drug. Right there is reason to get interested.

The herb I am trying is Ashwagandha (Withania somnifera). It proposed to do so much for so many areas of wellness, many symptoms I experience. It helps with sleep issues, boosts the immune system, can lower blood glucose and also blood pressure. I encourage you to look it up because there is a lot out there on this herb and I do not want to sound like an ad.

I am fascinated with the possibilities of getting off as many man made drugs and all their rotten side effects as I can. When the drug I took that raised my glucose A1C to 9.3, the remedy was to take another drug at night to bring it back down. The second drug costs $421.00 a month (without insurance). It can cause pancreatic cancer. Wahooo…. Just what I want. I truly cannot tell if it lowered the levels, or getting off the drug that caused the higher level is what is lowering the levels. I would have to go off it and see what happens. Another risk, but I think I have to try it. I cannot take certain cheaper meds like metformin because my kidney was compromised years ago when I was prescribed a pharmaceutical nightmare. This is a never ending circle that many folks get caught in as the body ages and they start taking more and more drugs to feel better.

My cholesterol was normally low most of my life, again surprising the doctors. It has steadily increased over the years to the point of being 238. My doctor wants me on a statin to bring it down. I tried it and had an immediate reaction and said no. I started taking fish oil religiously this winter. My last lab showed my reading at 188. I dropped 50 points in two months with taking the fish oil which costs nothing. My husband also got off his prescribed statin and took fish oil and lowered his back down significantly as well. Fish oil has no side effect and is a cheap OTC solution.

The issue with non-prescribed and non-regulated herbs is dosage and interactions. A prime example is teas. Chamomile is a very popular one for calming and sleep. It can significantly thin your blood if consumed in quantity. What is that amount, I do not know. Many herbs and minerals can become toxic to the body and do more harm than good if taken in large doses, and that matters by the individual. If the government steps in to regulate this area of health, the cost will skyrocket. The Ashwagandha could possibly aide me in getting off two drugs, cost together over $650.00 a month (uninsured). A bottle of 60 capsules cost me $16.50 and that was a high end product and an expensive store.

I will share with my GP doctor next week when I see him my viewpoint on delving into more natural remedies. He is going to be surprised with the lab results as my A1C dropped over two points also in two months. He is a young Indian doctor and we have talked about natural remedies. I am not sure if this is a conflict of interest for him, but I want him to be aware. He did not prescribe the arthritis medications and was upset with the reactions I was having.

I also want to be clear that your wellness is a team effort. Unless you are a doctor, self-prescribing can be dangerous. But I also feel very strongly about forced care plans. I am very warry of any practitioner who promises the world or threatens patients who they deem non-compliant. “If you do not take this medicine I will not see you.” But patient centered care is my vocation and a whole other topic.

 

 

 

Falling Away

fog In everyone’s life there comes a point when strife, pain and anxiety overwhelms you to the point of making you immobile. It renders you a victim, no matter how much you think you can over come. It is ok to take time for all feelings and situations and to live within them so that when things change, and they always do, you remember from whence you came. But I was past embracing the pain. I was way over feeling the morose apathy and found no peace with my existence.

fogfalls   I came to this conclusion a couple of weeks ago. My illness had rendered me to the point of filing for FLMA and taking a leave of absence. I was in so much pain, depressed more than I have ever been and suffering because there was no escape from the constant pain, not even in sleep.

shipwreck  I was a shipwreck with what seemed to be no point of return. I am usually a fighter but with all the work and personal garbage that my family and I  have gone through recently, on top of the slow deterioration of my body, the warrior in me was ready to lay down the sword. I decided that time may have been running short for me if things medically could not be turned around. I envisioned my life locked in a world of abject pain and suffering.  I decided I better enjoy what mobility I might have left. So my husband and I took off for four days to Niagara Falls and stayed at a very expensive hotel right on top of the falls.

rolling fog We drove up in a rain storm with fog rolling in off the Niagara River. Our room was on the 19th floor. The weather matched my feelings.  I embraced the quiet clouds rolling up and over the view below us. There was something very soothing and calming watching the fog obliterate buildings and then move on to engulf something else. The view was constantly changing.

rapids The battle  to obtain my new medicine had been finally won after 19 days. I had begun the regiment the Tuesday before we left. I knew that it would not medically change much in the short time I was on it. But the hopelessness was gone. I had a future and possible chance to begin to heal and feel somewhat better. The hope alone was tonic and elevated my mood. It is beyond me why working with insurance and pharmacies always is such a fitful struggle. What happens to the elderly who are not as tenacious as I am?

clear falls We treated ourselves to a couple of  quiet days of reading and napping. The weather had improved but was still very cold. I sat in front of the window, bundled in my comforter from home and read and watched the water.

clr falls   The power of the water constantly flowing over the rapids and then cascading down and over was a hypnotic view. We had a Jacuzzi tub and twice I filled and soaked. We stayed in and just completely chilled. We did not watch TV or have much contact with the outside world.

Amrc falls  On day three, we ventured out and down to the falls. It was not an easy day for me physically but the sun was bright and the crowds were not too bad. But I did noticed that I was able to do more than I thought. My husband was very patient. We sat often which allowed us to spend time doing  a favorite activity of people watching.

night falls  We dined in the fancy restaurant in the hotel for dinner and had lovely buffet breakfasts. In between was just pure free time. I read two books and did a lot of introspection and mediation. Sometimes, I just nodded out.

falls rainbow  I am writing this two weeks into my new therapy. My mood is completely different. The gloomy fog is gone. My pain level is much less, although not in anyway alleviated. I have run into a side effect that I think I can manage.  I know that the quiet time and reflection was well worth the cost of the trip. We are all worth spending time and hard earned money on ourselves and doing it guilt free. I know the break from the everyday was an integral part into the shift of my physical and mental metamorphous.   I learned a valuable lesson about how sometimes you have to completely change your environment to see the way out of the Rabbit Hole.

 

 

The wonderful world of medicine; the crappy customer service

pink clouds 8-15

This post is going on a website for patients who have Psoriatic Arthritis. I am always trying to do advocacy for educating people about this disease, so I thought I would post it here too. Even practitioners do not understand PsA. Everyone thinks it is the same as osteoarthritis and it is very different. This disease attacks more than just joints like knees. It causes deterioration in places like your toes and spine. I have it in two places on my spine. But it also makes you depressed and feeling malaise. Part of that is losing your mobility and part of it is the chemicals of inflammation. But the arthritis or inflammation spreads to organs causing bad inflammation in them. If there is an “itisis” I have had it, pancreatitis and diverticulitis included. I had to have my gallbladder out because it became inflamed.

I am so grateful that there are things I can do to get better. Ten years ago, there were not so many choices for people who have Psoriatic Arthritis. Now there are many new medicines out there. I have tried many and Enbrel was my lifesaver for over 6 years. But my system turned on it and the biologic became impotent for me. I had to come off. I was able to do just about anything I wanted while I was on the drug. The really bad side effect for me was weight gain and charlie horses. I had charlies so bad and often at night that I became afraid to move. In sleep, I would clench a muscle and off it would go. But I kept giving myself my injection. I was in remission for several years.

Almost two years ago now, my doctor said I needed to switch. I went on Simponi. The drug scared me because it was so fragile. It had to be kept at a certain temperature and could not be shaken. One time they shipped it and the idiot delivery person put it on a porch where I could not see it. We never use that entrance in the winter. He had to climb up a very snow covered stairs to deliver it and it was hidden. The drug froze. It cost over $1500 a shot. I was on that drug for about ten months. It did not work great and I noticed I was having more trouble walking. It was like my hips joints where filled with silly putty. But my skin and scalp remained clear. I have psoriasis also.

Then in August, my blood pressure was way out of line. I had it read after I came back from vacation and the shot had been in me for two weeks. At that time it was 165 over 92. I felt terrible. My blood pressure is back to a consistent 120 over 80 or less. I also was having a reaction that I did not know was from the drug but when I stopped taking it, the reaction stopped. I was having horrible bowel issues to the point I could not drive to work without panic and on occasion having to stop in a park to relieve myself. My lowest point was once on the way in, I was in super trouble and I had to stop. There was a sheriff sitting in the parking lot. As I ran to the bathrooms, I found them locked up. I had to run to the other side of the building and squat. I did not know what I would have done if he came around. I probably would have gotten arrested.

The doctor took me off of that drug and put me on Cimzia. I was off everything for three months when I finally got the Cimzia shots. This was a real mess. I had to take two syringes and stick them in to my gut. That was not the hard or bad part. It really did not hurt at all. I am too fat for it to hurt. Within a few days, I had gained over five pounds. Nothing changed from what I was eating. I felt really funny, too but could not tell you why. It did nothing to help me either. Two weeks later, I took another series of shots. I felt instantly terrible. I was shaking, my mouth was dry and I was dizzy. I also continued to gain weight. The next day I took a glucose reading and it was 368. Oh crap.  I continued to monitor my glucose and it never went down below 250. It was very unusual for me to have supper high sugar. Anytime I ate something with sugar in it, my levels would sky rocket. One time I have a small piece of a Swedish Christmas coffee cake someone sent me. It was loaded with sugar and my reading was 385. I stopped consuming anything that had sugar. I stopped all bread and starches and anything with high carbs. This was Christmas when I normally bake and make cookies. I did not. But I also could not enjoy all the festivities going on either. It was very hard.

Eventually, in January I saw my GP and he put me on a low dose of Januvia at night. The bad side effect of this drug is insomnia. I wake up in the middle of the night and have anxiety attacks. I take a melatonin now and that seems to help and I sleep through the night. It has taken four more months but my glucose readings went back to normal. I still watch what I eat and I have learned to not miss bread so much. It was a pretty scary experience and you feel helpless when your sugar is uncontrolled. The one thing I do not want to add to my diagnosis is diabetes. But I stopped the Cimzia completely. I lost the weight which reached 11 pounds in one month.

I finally got in to see my rheumatologist. He was cool about it but also not overtly sympathetic. My skin is erupting and since he is a teaching professor, he always has a student with him. He was using my skin to show her how I have two different types of lesions. This was an issue early on because they had a hard time diagnosing me. But I have scalp and plague and inverse psoriasis, but I also get little red dot covered circles that look more like measles. I was actually diagnosed with Psoriatic Arthritis first.

My rheumy prescribed Otezla. At this point I am ready for anything. I can hardly walk for more than a short distance without pain. My knee gave out the other night. I was just standing in the kitchen and whomp; I almost went to the ground. I cannot sleep more than four hours before it becomes painful. I am tired cranky and turning into a lizard. I am ready for some help.

I saw the doctor on 2/19. He prescribed the starter pack and the maintenance Otezla. I can see it in the system we have called My Chart. About 7 days later, I emailed the office and said, hey, what is going on? They never put the prescription through. The Dr. also wrote it for  a small pharmacy that I use for normal drugs. This is a specialty drug and I use a specialty pharmacy. They apologized and sent the prescription out again and to the wrong pharmacy AND they never submitted it for approval or authorization from my insurance company. I had to call everyone back again. Finally the authorization  came through and I called the still wrong pharmacy and sure enough, they do not fill that level of drugs. So I email back to the Dr. office and then two days later they sent it out to the specialty pharmacy. I called the pharmacy and ….they need to get authorization and other verifications. This was Tues, March 1. Every afternoon, I called them and they said the same thing. They were checking on it and would expedite it, almost word for word. Friday I was at my wits end and again, they gave me the crock of crap about expediting it and would call me back. I never heard from them. This is day 17 and no drug.

Meanwhile, the inflammation had spread again into my bowels and I had a horrible weekend now capped with a major diverticulitis attack. I was so bad I thought I was going to have to go to the hospital. I will have to be careful what I eat and hopefully it will calm down. I have never had it so bad that I was passing blood. And all this is because of the inconsideration and lack of follow through from the Doctor and his staff to the pharmacy. No one cares anymore. I cannot imagine if this was life threatening and they were screwing around with the prescription what would happen.

I am also angry that I have this disease. I am angry because I want to be able to move. It seems incomprehensible that 17 years ago I was playing tennis three times a week and mowing my lawn and other physical activities. I have great hopes for this new drug, and also great fear. It causes diarrhea big time and depression. Yeah! But it also causes weight loss. I am not too worried about the depression because if I can start to feel better, I will be much happier. It is also spring and I am always my most cheerful then. The symptoms get better as your body adjusts. I am grateful for the hope of a better future with this product. I hope I am not being naive.

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.

 

Rough water

rought sea The River

Have you ever looked at someone who gets out of a handicapped parking space and watch them walk completely normal and even sometimes smoking a cigarette and wonder; “Are they really handicapped?” Or seen a large person struggle to get out and then lumber into the store and think, they should park farther away and walk for the exercise? There are so many people out there who have chronic illness that do not manifest in bloody sores or stumps for legs. But they still are impaired. I often wish that people who know me would walk in my shoes for a day and see how they would manage. I do not have outward signs of what I deal with daily, other than being a large person. But that says it all for most people. I am fat. And what always follows fat is lazy. However I am not lazy in any manner. But this is not about being fat. It is about chronic illness.

I have a friend who husband has been sick for a while. He stopped working, making his poor wife support the family of three. He stays home and often would not even get out of bed. I used to get really upset with my friend who always had an excuse for him. On top of that he smokes a lot of pot. They both smoke(d) cigarettes. He was finally diagnosed with Crohn’s but the medication was too prohibited, I guess, for him to get it. I am not close to her anymore but see her on Facebook. He was just in the hospital for surgery and I am sure it was his Crohn’s. To look at her husband, you would never know how sick he was. I was just as guilty of judgment like so many others.

I face many issues daily, including Crohn’s like symptoms. They have only diagnosed it as Inflammatory Bowel Disease, but Google that and see what you get. No one wants to talk about it. No one wants to hear how you suffer. It’s funny, women will go on and on about childbirth extolling all the gory details until in a hushed tone they will add, I pooped myself.  Even my rheumatologist did not want to hear about it. His reply was to go see the doctor I saw for my colonoscopy and stat. He prescribed Imodium.

I discovered that this is not an unusual progression for Psoriatic Arthritis. Not through scientific resources but from other people who are diagnosed with PsA. It is truly a crappy little secret, pun intended. There are a few drugs they prescribe for both issues. Who knew? I did not know that these changes in my physiology were part of the disease progression. Since I was diagnosed years ago, no one ever said I was going to have this issue and here is what to do. They still aren’t telling me what to do. Matter of fact there is little evidence based information on the topic of the link between PsA and Crohn’s.

After reading and talking to my Rheumatologist, we decided to go with a new drug called Cimzia. I have to take two shots every two weeks in my gut. They are self-administered syringes and not injectable pens. Thank goodness I do not mind shots as they are huge syringes. It could take up to three months to actually see any change in my PsA but already my gut is better. Not great, but not feeling like I have to go to the bathroom every five minutes or having a surprise when I have no place to go is a big help.

But in exchange for the things this drug can do, there is always a side effect. For me, it is charlie horses. I had this issue before when I was on Enbrel and it became constant and horrible. I tried to tell both doctors about it and neither one had a way for me to deal with it. I am not dehydrated. I am not lacking in vitamins. Once I stopped the Enbrel, they stopped. I went on Simponi last year and then in August had very dangerous reaction of it spiking my blood pressure and had to come off of it. Now, after only one series of Cimzia shots, the night leg cramps are back. I only slept last night in two hour blocks before my feet or legs would go off and wake me up. They happen in the day where my toes go up the wrong way. The circulation is fine and my ankles are skinny. (They are the thinnest thing on my body) I cannot find much about Cimzia either, not even on my user site. BTW, when you want to find out how a drug works, go to their chat boards. This is where you will really hear about issues from the people who use the drugs. This is much more realistic than the manufacturers statements. For example, I would not have known about the issue with Simponi raising blood pressure. On the manufactures sight they say it is only  a 3% chance. But, because I was aware, I was able to deal with it.  I knew it was a reaction I had from what I read on the user boards and sought medical attention. One person was hospitalized for his reaction which spiked him so high he was a candidate for a stroke.

My point is; we never know what a person is suffering from by the outward appearance. Things like depression and chronic illness and even grief are often not visible from the demeanor and appearance of someone. Often, when you live with these factors, you learn to just deal with and put on a pain free veneer.

I wrote last week about the fact that people are uncomfortable with the suffering of others. I quoted from another blog; He said. “instead of trying to cope and bury your issues, live with them. We are a society where other people’s suffering makes us uncomfortable.” He said that is why people want to help. “It is not really about the sufferer, it is about the dis-ease that suffering generates.” The author, Tim Lawrence, is speaking not about just illness, but grief and loss in general. You can find the rest of his blog at this site; http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reason

So yes, I am whining this morning. But I am trying to offer awareness. People deal with things in their own manner. My husband, who has arthritis in one knee, thinks he is a cripple (until he wants to play golf.) My other friends all have issues and they all deal with them in their own way. My way is to pull inward and shut off from people so I do not have to explain myself. I am not angry, I am in pain. I do not want anyone to dismiss my pain and tell me to get over it. It exhausts me and not sleeping is not going to help. It is very real. But it also very lonely and isolating.