A journal of healing

Posts tagged ‘pain’

In hot water

fogfalls   This sound really egotistical and it is not what my intent is. I am sincerely amazed how intuitive I can be. It is not always a great thing but it has kept me alive. This may seem like a small issue to some, but what happened this last week tells me it is important enough to share. Maybe someone else is like this and does not realize it. I am talking about stress and what it does to you.

About a month ago, I had my heating system annual tune up and cleaning. The guy who came to the house was very nice. The same week, my mother-in-law was in the hospital dying. The day he came, we were all supposed to meet at the hospital to talk about a care plan. I wanted the guy to hurry up and finish. I went to check on him and he starts telling me my system needs to be drained down and a new valve needed to be installed; the same valve that was replaced two years ago. Every time they come out, they find something wrong with the system. When we turned the heat on, it dripped two drops. He said he was going to adjust the pressure and some other things and then forty minutes later he left. They would call me to set up an appointment for the next work.

As the weeks went past, there was nary a drip. The system is a gas fired boiler that circulates hot water throughout the house. The heat is not drying as force air and is very cost efficient. And boilers last for decades. The parts that support the system do not. Since I have been here fifteen years, I understand that things need to be updated. The system is very quiet except for an occasional tick of the baseboards.

What was happening when the system kicked on was this rush of water coming into the system that sounded awful. It was very loud in the kitchen and the first time it happened it scared the crap out of me. I thought we sprung a huge leak. I went downstairs and all was well. We were not home a lot the next weeks and the weather was warm so it did not happen too often.

But every time it did, I would tense up so bad. Stories ran through my head of imminent disaster. It was amazing how loud the rushing water sounded. I thought that maybe he put the pressure down and that eventually the water would stop doing it. But it didn’t.

But my body flared. The intense reaction was so visceral. My home was in danger. I love my house. It is my safe place. I was not sleeping and a lot of other things were happening in my body. My morning glucose readings were very high. On top of the boiler, the garage door opening system broke and needed repair. I discovered that on Tuesday of last week when I came home and the safety eye was laying on the floor. The door does not close without it facing the other eye.  Then on Wednesday, the ice maker crapped out.

Luck was totally in my corner. The door people had an opening on Friday and could come out to fix it and tune up the opener. My husband was off and home. Perfect. He knew I was upset about the ice maker so he called someone and they could come on Friday too. We also had scheduled a tune up for my car on Friday, which was supposed to be no big deal. But you know how that goes.

I was so freaking frazzled that by the end of the week, my body literally was on fire and I had a diverticulitis attack. I was not sleeping and my hands and hips and back were flaring so much I could hardly walk. I went to work in the morning, after dropping my car off with the intent of picking it up and being home when the icemaker dude was coming. Since I was going to be home, I called the heating people and after a run around, they were going to send someone out as well in the afternoon.

The heating chap was a rather nice young man and he listened to what was going on. I told him the story of the valve and he of course was thinking his fellow worker was correct. But he heard the rushing of the water and looked at the gauges and said there was not enough water in the system and that was a big issue. He wanted to at first drain the system by going all over the house and opening up things… and I thought I was going to be sick. Then he put some water into the system and he thought the gauge was broken. He drained some water with a hose he had and a bunch of other things. He had so many scenarios of what was wrong and he tried many things. Nothing was wrong with the gauges. There just was not enough water in the system. He filled it back up and then went out to his truck and called the guy or the office. I went into the other room. He came back in still on the phone for a while. Finally, he called for me. He looked funny.

Seems I was absolutely right. The guy before drained water out of the system and reset the gauges improperly. The poor boiler was trying to operate without the right pressure or water. He could have ruined the system. There was nothing wrong once he filled it up correctly and reset the gauge. It has been quiet, no drip and is keeping us toasty. They offered me a maintenance agreement and gave me such a deal on it as an apology that it paid for itself. I get two years of free tune ups. Good customer service.

But what amazed me is how much my body calmed down. I spent the rest of the weekend in a much better place. I slept better than I have in a month. My glucose readings dropped fifty points and it is not from eating better, that’s for sure. My physical reaction to the loss of safety in my home was not controllable because I did not even know how bad I was until the things were fixed. I feel so vulnerable because I do not know how to fix the mechanics of my house. I hate being fleeced.

The car was fixed and only what I needed. The garage door works terrific and he fixed the issue of why the eye fell off so it won’t happen again. It did once before and I got it back on. The icemaker had to be replaced but I love having ice so it was worth it. The guy who came out was very nice and lives nearby and fixes all kinds of appliances. It is a good feeling of having someone like him available. He was honest and fair. All is well and there is a safe feeling again in my house.

Now, if there was only some way I could fix what happened on Tuesday with the elections……..

 

 

 

 

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“Living with where you are”

falls rainbow

Self-compassion teaches us that we need to come to a place of acceptance with whatever we have been given in life. It is the hardest thing to tackle and embrace. We use phrases like “if only” and “someday I will” to cope with that at this moment, this very present moment, I am not satisfied. Can we ever get to a state of total acceptance of what is, is just that?

There is always someone worse off than we are and then, they are people whose life seems totally charmed and conflict free. Deep down humans by nature are born to struggle and have conflict and it is not our place to measure and judge. But we do. We compare and emote how “no one knows what I struggle with.” That is a true statement. No one can know.

For example, pain is different for each being. We all have it and as we get older it is a constant companion. For me, there are times when it is overwhelming and there is no escape. This is what I have to deal with right now and sadly, it is not going to get better. Unless there is finally a miracle drug that works for me, I will progressively get worse. And the drugs I have tried have been a succession of making things worse, not better. This too is my present moment.

I am not dealing well with this, but I am trying to learn. One of the techniques I am learning is called “sitting with the pain”. Instead of ignoring it, I face it full on. I focus in my head the center of glow, the spot where the pain is the worse, and just sit with it. Sometimes it will calm down a bit to a dull shine instead of as spike of ice cold laser pain. Mediation also calms the beast.

But my life is not of a Buddhist monk. My life is filled with drama. I work fulltime in an angst filled profession where conflict and aggression are a daily part of my day. I have issues in my home life with family squabbles and pressure. This is a normal life and it is challenging.

What I am trying to learn is to be ok with everything. To accept this is what my life is and stop struggling. It is the struggle that exacerbates the pain. It makes sense. If someone ties you up, when you struggle against the restraints, it is painful. If you lay there and accept it, it’s not so painful.

But I am not one who quits either. I am not ready to lie down and give up and let this disease take over and make me bed ridden. I find myself very angry at times with my limitations. That anger has been getting worse because I am not at a place where I easily say, “Ok… that’s enough for today.” So I push myself too far and then end up in excruciating pain. And it is hard on my husband who often is the brunt of the anger. He is used to me doing everything. He sees the deterioration in my strength and stamina.  I think it frightens him. He is also used to be taken care of and he is not the best caregiver. That too is something that worries me.

Self-compassion teaches us to take care of us first. If we do not take care of ourselves, no one else really will and there you are. That is the heart of it. Self-compassion is not being selfish. It is learning to make the individual moments of your life the best they can be. No one else in the whole world can MAKE your life any better than you can for yourself. It is easy to preach these concepts. Much harder to live.

 

 

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.

 

 

 

 

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