A journal of healing

Archive for the ‘medicines’ Category

Suffering and compassion

reaaching

I have been reading some posts that stuck with me for the past few days so it is time to write my thoughts. The Good Doc wrote one that took my breath. It was about suffering. It was about hopelessness. See the post here. https://doctorly.wordpress.com/2015/01/23/fly-fly-away/

No one knows truly what another is suffering with. The word suffer conjures up images of intense poverty and starvation for most. But everyone suffers with something. I am at loss for why. Many religious fanatics would say it is the will of God. But does that make sense when in the same breath they preach goodness and benevolence coming from this same entity. Why would a higher power want its “subjects” to suffer? I never have nor will I ever understand this.

Do we all have some form of suffering that challenges us? And who are we to judge the level and which is more wretched? Why is it we accept the level of suffering in some and not others?  I could list the things in this world that outrage me and yet, that is about the extent of what I do about it, much like most folks.

And that is because I have to deal with my suffering and getting through life. And truly, that is about what it sums up to be. Getting through it all and making it to the next day. Believe me, my suffering is nothing in comparison to others, but that’s not the point. We all have a level of strife and frustration that is our suffering to deal with.

What makes suffering so miserable is that even though we all have it, none of us feel or deal with it the same. And you cannot truly understand or appreciate what another person is dealing with because being human comes with multiple variables. What you may be able to deal with, I cannot and vice versa.

When I read the post about the girl dying from Lupus, I felt a connection of suffering with her. I too know what it feels like to live with pain.  I too know the frustration of losing the control of the body to something that will kill me eventually. However, my death is not imminent like hers.

I am not wheelchair ridden and I do respond to medication. However, the pharmacy still has not shipped it. Friday I was on the phone for two hours. I was put on hold and just left the phone on speaker. I must have out waited her because when she came back on she said they were shipping my drug and went through the whole procedure to set up the delivery. It was all a lie. She was just getting rid of me. This is my form of suffering because I spent a weekend of not being able to sleep more than a couple hours at a time because of the pain. Is it the same as the girl in the chair? Hell no, but it is my level of suffering.

So what is the point of this post? Although I do not understand suffering and I certainly do not tolerate people who lie to me, I have to live with both. And although it really rankles me, I have to move on.

When I read the post replies to the Doc’s story, I saw different levels of compassion. The Doctor herself has an extraordinary amount of compassion and empathy which is truly amazing. Other posts were not so empathetic. I think unless you have felt the constant and profound pain similar to what this woman in the chair feels, it is hard to imagine wanting to be released from it even if it means death.

So the answer to suffering is compassion. But not only compassion to others, but also to ourselves. I know many of my friends who silently suffer because that is what we do, especially women. We wear our suffering like a badge. “OH, I have so much to do, I am so fat, I have to take care of this person or that child” and so on. They are all valid levels of suffering.

What would happen if business were built on integrity and compassion? What would this world be like if we taught kids from the get-go what compassion is and why it is necessary? What if bullying was not a trend but treated like a plague. What if the government was really concerned about its population it serves and not about self-serving? The list is endless. And none of it is in our total control.

But self-compassion is. So for today, take care of yourself. I think if we did this more, that the compassion would naturally extend out to others. And if you know someone who is suffering, take a moment to just be present for them. That’s all it takes sometimes. Just be there. Listen, care and be compassionate.

 

I am sitting here trying to write through the tears that are pouring out of my eyes. I hate this. I am so frustrated I could melt iron with my anger. And because I know my anger does nothing, I am even more frustrated and around I go until I just burst into tears and sit sobbing until I give up and go to bed. I just thought I would write and see if it helps. So….why am I so upset? Several things.

I have Psoriatic Arthritis. For those who do not know, it is an auto-immune disease which targets the joints and the surround tissue. On the scale of severity, I am pretty lucky and it has only disintegrated my foot, ankle and toes on either foot and I have some deterioration in my lower spine. I can live with the fact that I limp on some days. I can also live with the shooting pain for the most part and the pervasive ache that is so deep in my bones it seems to be like hot lava.

What I cannot live with is the incompetency of the people who I have to work with to get the drug that helps alleviate this pain. Because I am on a specialty drug, I have to go to a high end mail order pharmacy for my drug. Every single time I had to deal with the company, Accredo, it was a major clusterfuck. And they lie like a cheap rug. One time I had to go without my medication for almost three months before they straightened out their mistakes. And then when it was all done, and I went to order the following month, they cancelled my prescription because I had not called for it in three months.

Well, my insurance switched to a new pharmacy. Can you guess what happened? They have it all screwed up. Although it was supposed to be a clear transfer of the script and authorization, it did not happen. So now I am on week 2 past due for my med because of their screw up. First they did not have the authorization and now they say they have an authorization, but it is for the wrong dose. What I do not get is nothing changed from the one pharmacy and the script was for at least six months.

Meanwhile, the pain crawls up my back like a sloth climbing a tree. PsA does not affect just my joints. It also affects my hormones and internal organs. It changes my body chemistry. This creates a situation where I am even more frustrated. I put on weight. So I have been on Weight Watchers now going on three weeks. I lost many pounds the first week, less the next and so far this week I have GAINED 2.5 pounds.

Everyone will say, “it’s what I am eating.” IT IS NOT! I am tracking every mouthful of my food intake.

I am following the point system which gives you a gimme on fruits and vegetables. They say you can eat all you want. Well, for me, it is the basis for my diet normally so this is very easy. But it does not make me lose weight. So now, I am looking up the nutritional value of even the fruits and veggies. For example, broccoli is wonderful for you. But a head of broccoli has five points when you put it into the WW calculator. That’s a lot of points. And yes, I can eat a whole head of broccoli between lunch and dinner. Even with me counting those, I still eat every day 10 or less points than the amount I can. And I gained weight. Do you have any idea how frustrating this is?

So the answer is, move more. Get up and exercise. Well,……. See above. Last night I worked with my DVD on yoga. This morning, I was in pain. As the day wore on, the pain increased instead of got better so I am not doing it again tonight… Anyone else see the issue with this?

Writing helped me to stop crying. I am grateful for that. But I know as soon as I head to bed, I will start again.

On top of all of this, a dear friend was diagnosed with cancer today. This is a re-occurrence for her, but it is not in the same place as it was years ago. I know she will probably be fine, but I cried all the way home thinking about her and how brave and wonderful she is.

And then I think…I have an issue? Ok that set me off again… Night!

The eyes have it

eyes    Today I feel like I reached the bottom, which is fine and now I am on the way up again. So true confessions, there was more going on with my life which I did not share because I did not know all the facts. Something occurred today, which has swung the pendulum. One thing I have learned in the past three years “hang on, nothing stays the same.”

The short story is on New Year’s Eve, I went for an eye appointment to get new glasses. It has been four years and my glasses broke right in half. I had an old pair which was great. Seems my prescription for the past ten years has not changed much. Wonderful!

However this time, the doctor found an anomaly in my eye. She said my optic nerve was enlarged. I made an instant appointment to see a specialist. And then, being who I am, I started Googling.

Turns out that the condition has a variety of names, none of which I knew. Seems the cause of this condition can be from medication, blood pressure, fluid, spinal fluid, and the one that stuck with me…..being obese, which is called papilledema. When I read that, I was devastated and furious. I cannot find anywhere what the connection is and why this can cause this condition.

The first technician I saw today looked at the readings and info from the first doctor and said she felt the readings indicated a normal range. But the Doctor said to do tests anyways. So I went through a battery of tests for about an hour. I had different drops and stared at all sorts of bright things.

This was all fine. Leading up to the appointment was not. All the information I read was….well, it just added to the failure I have been feeling about myself lately. I felt “I did this. I deserved it. If I was thinner, this would not be an issue.” No one can beat themselves up like I can. It was a week of this and it got worse and worse. I would check something on google during work and get upset and then come home and read it again, only adding to my angst.

The bottom line is this. I do not have papilledema. I have the markers for MAYBE glaucoma…. Or it is just the way my eye cup is. She said do not lose any sleep. I asked her if this had anything to do with being fat. She just laughed (nicely) and said no. It may be nothing at all, but without any past history she can’t tell. I may have been born with this enlarged opening. She said to just make sure I have an eye exam every year. We are going to do more baseline readings also. She said actually my eyes were healthy, pressure and depth and thickness of the cornea all were fine. I finally let out my breath.

I had been seeing the same eye doctor my husband had for years. I saw him for about 8 years. Last year, my hubby had to have surgery for cataracts that were so bad, one eye was almost totally occluded. And of course, my husband did not say anything. When they went in, it was much worse than they thought and he was under the knife for an hour…. for a fifteen minute surgery. He is now also seeing someone else.

If I had a vision loss of any kind, I would have known it. I am fanatical about my eyes. I am a photographer. I express myself though the lens. (I don’t post many here) I do so much with my eyes that they are absolutely precious to me. The punishment I put myself through this past week just is a demonstration of what people like me do to themselves.

The upshot of all this is I have this safety net in place to help me protect my eyes. I am ok with her prognosis and diagnosis as she was pretty convincing that this really was not an issue, but preventative.

And I think I finally faced up to some challenges I have about my health. So with this hurtle out of the way, I think things I will start to pick myself up again. I am up for the challenge.

Trauma induced Obesity…. Really? No Sh*t!

rain clouds'

I actually wrote a whole different blog last night. I decided to sit on and not publish. In the morning, I reread and tweaked it and thought I would send it out anyways later. But in going over my emails, I found this email from a friend and therapist who sent me a blog article. I did not get to read it until later in the day. I had taken a break from work and decided to read through. I sat there at my desk crying.  Fortunately no one was around much. I have a heater fan running so hopefully no one heard me sniffling. I stopped and mopped my face up and decided when I got home to reread the blog and then write. Oh…. I was going to write.

I spent time tonight working on house stuff, laundry and the sorts and just sat down a little while ago to read the blog again. I was actually not thrilled about facing it again. I then went to the site and looked at some of the older posts. It took my breath away. It is so overwhelming to the point it knocked me out of writing what I wanted to. I am just ….and I am not sure the right word is that I am. I am mad because there is so much statistical information out there on trauma induced illness and yet it is so unknown by practicing clinicians. I had written about the ACE study before in my blog. If you have not done an ACE study, do so. And then read the implications. It is enlightening.

http://acestoohigh.com/got-your-ace-score/

But now as the night has progressed and I spent it reading instead of writing, I am going to let the blog speak for itself. It is quite a collection of information. I am going to share the one line that made me cry. And it is terrible. The author is sharing the story of how the doctor who was working in creating an obesity clinic was upset because he was not successful. He went on to dig into many of the (obese) patients’ history and found a resounding amount of them had some form of childhood trauma. That is not what made me cry….it made me slap my head and say out loud, “Really? No shit!” This is right from the Dr.’s story after he had given his results to a body of educated physicians and clinicians.

So, if you were Vincent Felitti, whom would you pick as your first audience to reveal your stunning findings? A group relatively informed about obesity that would greet the new information with extreme interest, praise and applause? Natch. So, in 1990, Felitti flew to Atlanta to give a speech to the members – many of them psychologists and psychiatrists — of the North American Association for the Study of Obesity. The audience listened quietly and politely. When he finished, one of the experts stood up and blasted him. “He told me I was naïve to believe my patients, that it was commonly understood by those more familiar with such matters that these patient statements were fabrications to provide a cover explanation for failed lives!”   http://acestoohigh.com/2012/10/03/the-adverse-childhood-experiences-study-the-largest-most-important-public-health-study-you-never-heard-of-began-in-an-obesity-clinic/

……..A fabrication to cover FAILED Lives?   Oh man did that stick in my craw. Truthfully it makes me furious. So again, because someone is obese (and I hate that word with a passion) the presumption is that (1) they lie and (2) their life is a failure. If you think this is an exaggeration, you are not in the world of being overweight. The reason I was crying is because it happens a lot. To read someone with such credibility admit this was overwhelming to me. It is pervasive in the medical field and I face it every day at my job. That is exactly what people, doctors and other clinicians have projected to me. I have heard other large people tell about me about their discrimination. A person I know just died because they refused to give her a liver transplant because she was overweight. Prime personal example: years ago, I had gone to have some work done up to find out why my a1c had spiked. I had the Chief of the Endocrinology department tell me I was a waste of time, that I would never be able to lose weight or exercise like HE did and so he was going to march me down to bariatric surgery immediately and get me fixed. (I have to breathe deeply every time I think of this) He never looked at my chart. If he had he would have seen my blood sugar had spiked in three months after a life time of low to normal readings. It took me having to read and discover that the prednisone and other drugs they slammed me on for the PsA all raised blood glucose. AND when I went off, it came back down. I went to see a nephrologist after one of my kidneys failed. Again, he never discussed anything but the fact that I was overweight and he wanted to bet me, BET me, that I would NOT be able to lose weight. I think he thought he was challenging me. Again, no one ever told me for a year my right kidney had failed…first concern…and that I had developed stones and they were a by-product of the PsA…it took me eight years to find that out and I should have been medicated then, eight years ago, to reduce the creation of more…which happened. No one can see past the weight. I am a non-person.

That last statement about being a non-person is very telling. I am going to stop tonight and let it just sit out there. I hope you will skim through the blog article: http://acestoohigh.com/2012/10/03/the-adverse-childhood-experiences-study-the-largest-most-important-public-health-study-you-never-heard-of-began-in-an-obesity-clinic/

 

 

 

 

Call it day

It was such a bad day that I have to laugh at it. It did not start out funny at all. Matter of fact is was terrible.

I am very tired. I am between medications and so I have no relief for my PsA. It is completely taking advantage of the situation. Seem you can build an anti-body to the drug, in my case Enbrel, and render it useless. And for almost $400.00 a pop, that’s pretty wasteful if it does not work. I had been on Enbrel for eight years. For a long while I could go a month or more between shots. But it quit working. I am waiting to try Simponi and it should arrive tomorrow. I am scared of starting something new. It costs $1800.00 a pop but you shoot only once a month. Actually, I wish it all would go away.

I was very upset to begin with from the day before. I had been to my in-laws. I will not go into the details but I ended up waiting on everyone. I was on my feet way too much. I spent the morning cooking at my house and then we took the food over. And when it came to eat, they forgot me…. FORGOT ME…. and I ended up with sitting on a corner of the table with no food but a piece of turkey. It triggered all sorts of memories. But I stifled it or I should say stuffed it. We got home and I went to bed. When I got up this morning, I was still very outraged and pissed.

I did not want to go to work either. The day was supposed to be sunny and warm and it was. But I was going in. I was sitting with my cat, who likes to visit in the am, while I was looking at my morning email. I was scritching her under her chin and I felt something and thought…no way….fleas? She does not go out. We went down to her room and I put her up on the bed in there and combed her. Not an easy thing and as she bites. But sure enough, on the comb was a flea and eggs. I flipped out.

I mean I flipped out. All the pent up anger from the last couple of days and the fear of fleas pushed me completely over. I had one of the worse meltdowns I have had in a while. I am not proud of this and I am not making excuses either. But you have to understand two things.

One: I hate this disease. I hate the slow and insidious progression of it. It will win eventually. I am a fighter but this wipes me out. It takes all my strength to act normal. I do not want people doing for me. I want to be able to move and take care of things. Not only does the pain get me, but it zaps my energy. I am trying to hold on to how good I felt in remission for eight years and I believe I can get back there. But it does piss me off when people just expect me to take care of everything. I guess I could blame myself because I rarely ask for help.

Two: I hate fleas. I meant HATE. They make me itch just thinking of it. I had a neighbor whose house was infested. I went to feed her cat and came out of the basement with my legs covered in fleas. It was completely gross. Since then, I have a real thing about them. This summer we came home to our doggies having them. I went nuts with laundry and cleaning and bought $75.00 flea collars. I got it fast enough and they remained clean. I just took off their $75.00 collars (I had to cut them off so there are ruined) after we had a week of freeze and snow.

I was so freaked out that my stomach let loose and I got sick. I decided to stay home as I knew it was not going to get better. I was going to clean and do laundry. I decided to go to the pet store and get a collar and flea spray for the house. About half way there, I got sick again. I went back home.

I was sitting at my dressing table and my eye glasses just broke. They broke right in half at the nose piece. There is no saving them. They were very expensive and not supposed to break. They are titanium. I just sat looking at myself in the mirror with these two lenses dangling on my face.

I finally felt strong enough to go to the store. In my rush to go and get back, I left the door to our bedroom opened. I got back after spending over $100.00 on flea stuff. I went to change and found the door open. I knew what to expect. The little boy dog peed on the bed.

While making meat loaf for dinner, I realized that the can to the bread crumbs had never been opened. I asked my husband to help since my hands were covered in ground chicken. He dumped half the can in. I just looked at him.

Now all of this produced a very unpleasant day. I had several bouts of crying. I think I just need to release all the fear and anger I have about feeling crappy. I hate feeling crappy. And I hate feeling scared that someday I am not going to be able to walk. Unless you have really experienced something like this, you will not understand. There is no cure for PsA. It will win unless they find a cure in my lifetime. But it is not going to get me easily.

But in reflection, I am going to laugh because it was so unbelievable. I am laughing at my bewildered face in the mirror with the lenses dangling on my checks with only the ear pieces to hold them. I had an old pair and found them. They actually were clearer to see out of. I guess I needed new glasses anyways. The flea situation seems to be under control. I did seven loads of laundry, but it is done and I do not have to worry so much. Everything the cat sleeps on is washed and sprayed. Most of it spent drying in the sun so it will be safe. The doggie’s beds were clean, but I sprayed the beds and set them outside to dry in the sun too. I was washing the bedding on our bed anyways, so the little pisser got it before and not after. That was good too. The meatloaf came out ok. But it will be better tomorrow when I put it chunked up in sauce.

I did get a chance to sit out in the sun for a while today. While I sat there, I made a promise to myself to not put myself in the situation like I did with his family ever again. This is not the first time by any means they have taken advantage of my kindness. His parents are still alive and so for them, it is ok. But when they leave this world, the rest of them can kiss my ass. And yes I hurt a lot as I did too much today. But I got a lot done, so I am ok with it.

Someday the uglies get you. I want to move past all this and get back to feeling like my old self. I usually am very energetic and so to lose my gusto makes me very angry and frustrated. It does not really help to not move, but that is the result. So I am grateful for the options I still have. I am grateful I had a sunny day to do wash and clean out the kitty’s room. I know she hates the collar but she likes the attention. She is in quarantine for a while. I am grateful the dogs remain bug free so far. And I am very grateful for bedding freshly washed and dried in the sun. I am so grateful I am going to go join them. Here’s hoping tomorrow will be better. Night all.

A rant by anyother name is just a bitch session

Is it me or is it me? Silly question but I will explain. I have a chronic illness. When it first hit, I became almost immobile. I can remember crying because I could not get out of my car, I could not step up into the house, and my hands were curling into claws. I finally got diagnosed with Psoriatic Arthritis. It is a funny little bugger of disease. First of all, people have no clue what it is, even medical personal. I have had to explain it often to the clinicians I work with. Worse was the time I had to explain it to a Doctor. People think it is just arthritis, much like osteoarthritis, which affects joints. This monster destroys the surrounding tissues like ligaments. But that is not the worst of it. The inflammation caused by it is unreal. This inflammation settles in joints like a sticky fog. Again, not necessarily the worse of the situation either. It is what is happening inside to my organs that is more worrisome for me. But the thing I want to write or should I say vent about is the health system we are in and where we are heading. But wait….. I work in the field. HA!

I guess that is what bothers me the most. One of the things I am supposed to be in charge of is Patient Satisfaction. I take my role very seriously. I do not think many places do. For example, after waiting forty-five minutes to be brought back to a visit room, I asked the nurse tech at my primary if they were following Patient Family Centered Care practices like all the affiliates are supposed to. She had no idea what I was talking about. When the Doctor came in after another half hour wait, I asked him. Can you guess what he said? “Patient what?”

But the worse culprits are the pharmacies, especially the big specialty pharmacies. I have to get my shot from Accredo which is possibly the worse company in the world. I won’t bore you with the details. But it took me three months to get my order straightened around with multiple threats last year. I have been getting the same medicine for eight years, but from Express Scripts. Why it was so badly screwed up was beyond me. This time, I am changing to a new medicine. I have a lot of trepidation about the potency of this drug, but I have no choice. This is all stressful.

And this is where I am headed in this short rant tonight. I am in too much pain to type much. First of all, no one ever told me where this disease was going to take me. Someone might respond with, well, they did not want to worry you or no one knew for sure. Well that is a lie because they do know. They know full well what the progression of my prognosis is. Everyone is so focused on my weight and have always tried to pin everything on it. They just never said that PsA will get into my intestines and cause a reaction similar to Crohn’s. Doctors: “Oh wait, have you not been telling us that you have been having chronic issues for a while? And we told you to take a probiotic. Did we forget to tell you that the reason your uric acid levels were so off the chart was due to the overabundance of cell production caused by PsA and that it changed your pH levels…and has probably eroded you gut… oh and wait, we forgot when you were diagnosed with three (now five) .06 kidney stones, all uric acid, that we said you will never pass because they are too big”….. and I have passed over 30 stones…. “That you will have significant increase of having monosodium urate crystals…also known as gout which cause severe joint pain”….. which is what is happening now “Oh and so we are giving you a drug to help with the uric acid production  but it will increase your weight” which it has……see where this is going?

So now they are trying to put me on a new drug that is supposed to work better on my particular symptoms. Fortunately, my psoriasis is not bad. The plagues do not look like “normal” psoriasis and so it hindered being diagnosed with that by a top dermatologist. It was not until the PsA presented they figured that out. But what is going on inside is pretty bad. It just started getting really bad last spring after I passed a kidney stone that semi-blocked my urethra for almost a week and put my acid level at 12. (normal is 4 -6) And when your fluids in your body are like battery acid, well it is not too good. I have returned calls three times to Accredo to get my new drug shipped, and every time it is screwed up. Thankfully, I do not need it to live, but I sure hate the stress.

As so this is my wrap around for this rant, this pathetic bitch, this sad tale of “poor me.” I hate the medical field. I work in it and that is extremely stressful. I have to deal with it which is even more stressful. As we age, medical attention is a probable experience we will all have. I did not get sick at all until I went through the very stressful situation(s) of my divorce and presented with PsA. I was in my early 50’s. It got better for many years, and now is back with full vengeance. Now, the doctor did tell me that it would come back. He said I was very lucky to be in remission for so long. Hopefully this new drug can kick me back into remission. But one of the things that makes disease present is stress….dis…ease…there is a reason it is called that. But dealing with the medical field is bad now, but trust me, it is going to get worse when we get ACOs. Sigh……too tired to go into it all. I am not feeling well at all. I get robbed of my sleep as even just lying there is uncomfortable. I hate this. I thought writing might help. Nah…