A journal of healing

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…

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Comments on: "A rant by anyother name is just a bitch session" (6)

  1. Maybe sharing helped more than you think. Talking about all that hurts me helps. I am very sorry for your pain on all levels including sub-par drug companies and long waits at doctors. I find it very hard to find good quality care. Once a name of a good doctor pops up they are full before I call. I encourage you to keep sharing. Others may relate with some of the same issues and may be able to share more valuable information on what you are dealing with than I have to offer.

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  2. I’m so sorry you are in pain. Pain is just the worst. It swallows you up and leaves you feeling afraid and frightened that you’ll never feel well. Compound that with years of abuse and it’s just unbearable. I’m sorry.

    I’ve shared with you that my husband has PA. He was diagnosed at 23 years of age. It took a year and a brilliant doctor to finally diagnose him. Honestly, we just happened to be in the right place at the right time. We’ve dealt with curascript and acredo and the whole dang lot of them. I completely understand your frustration. He did well on Enbrel and was one of the first PA patients to use it. At the time it was only approved for RA. When he was diagnosed with cancer a few years ago, he could no longer take Enbrel or Humira (which he was on at the time) because of the anti tumor necrotic factor. So they started trying new injectables that don’t work as well. Last year the pharmaceutical company messed up the delivery of a new injectable medication and it was a long delay. I was beside myself. I had to sit by and helplessly watch the PA take over his body as we waited for these meds to arrive. We kept calling and they kept saying it was coming but it wasn’t. This was a huge setback for him. Since then he’s had to take prednisone in addition to an NSAID and Methotrexate. The pred helps a little with the pain but doesn’t stop the damage.

    Since this set back his doctor has been trying to quiet the inflammation without success. Last week he started a new, oral, medication which takes 6 weeks for your body to acclimate to. It is making his so very sick. It’s awful and honestly with his active lifestyle and job, we’re not sure if it’s worth it. What I’m getting at, in this long winded response is this: have you tried working on healing your gut? It sounds like such a weird question but there has been so much evidence that leaky gut syndrome is the cause of PA because it is in fact the source of the inflammation. We’ve spent years refining his diet and doing elimination diets to see what foods cause inflammation. In addition to the dietary changes, he takes VSL which is a super potent form of probiotics in conjunction with many supplements and herbs such as Ultra InflamX by Metagenics and Beta Glucan.

    I hesitate to talk too much about food choices because you’ve indicated that you have issues with weight so I don’t want to come across the wrong way. It’s important to me that you understand that because I don’t want to alienate you or cause you any more pain and discomfort. I merely want to suggest and inquire if you’ve heard of the paleo diet? It’s a diet which eliminates grains and legumes. They cause inflammation. This diet felt so incredibly counterintuitive to us a few years ago because it goes against everything that has been ingrained in us by the FDA. I have to tell you chaining our eating has saved our lives. We were both sick, I have Hashimotos and I don’t tolerate gluten at all. We are now going to try not eating eggs and nuts and nightshade veggies. I’ve been doing a lot of research and speaking with eastern med people and there’s strong indication that these foods wreak havoc on folks with autoimmune diseases. It feels restrictive but at this point, it is in fact the only thing we haven’t tried and seeing how well my family responded to changing to a paleo diet, we figure we’ve got nothing to lose.

    I figured it couldn’t hurt to share this with you. My hope is it will help and even if these suggestions are overwhelming or not an option for you, at least you can take away this: you’re not alone in your suffering. I hear you and I see you and I understand how horrible it is.

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  3. By PA I mean Psoriatic Arthritis. I’m noticing you’re calling it PsA. I usually don’t abbreviate it so I’m unclear on the proper way to do so. I just wanted to clarify. 😉

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    • thank you for your concern and ideas. I am actually going to a nutritionist early next month. It has gotten pretty much ridiculous what I CANNOT eat. It ought to be real interesting because of what I can eat.Stay tune because I actually think that a lot of this has nothing to do with I put in my mouth. But we will see. And PsA is the correct way to abbreviate 🙂

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  4. I’ve been dealing with a gradually worsening case of PsA for all of my adulthood, but I only just now figured out that’s what it is. I get fevers. Do you get fevers? I did not know this could progress into an intestine problem. Bleh. I think I just learned more than I wanted to know.

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