A journal of healing

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!


Comments on: "" (4)

  1. Gentle hugs your way, not too tight so they don’t hurt. Keep up with the points, don’t give up. When the inflammation gets better once the med is straightened out, you will be that much farther ahead of the game.


  2. risinghawk said:

    What Victo said . . my heart is with you.


  3. I am so, so sorry. Oh… stupid, stupid pharmacy insurance companies!

    My husband and I used to work for a large company that handles the insurance for mail order pharmacy prescription medications all across the country. In fact, we met there. We were hired and trained together to do telephone customer service. Our job was to straighten out the kind of issues you are having.

    Telephone customer service work has a very high rate of turn-over, mainly because in that line of work, you are guaranteed to get yelled at and cussed at several times each day by customers who are very unhappy — many of whom, like you, have every reason to be unhappy. By the time my husband and I went from being brand new coworkers to best friends to getting married, we had been working for this company for one year and almost none of the other people were working there when we were hired, were still there. That is how bad the turnover rate is.

    My point is this: the odds are very high that each time you call the customer service number for your pharmacy insurance, you are talking to a person who is brand new and who does not yet know their way around their computer. In a situation like yours, when you call, you need to ask to talk to a supervisor right away. The customer service rep will not want to connect you to a supervisor, because that will not look good on their record. They will try to talk you into letting them help you. Don’t fall for this. You need your medicine; So What if the person who answers your call is going to get a little tick mark against them for sending your call to a supervisor? Stick to your guns, DEMAND to talk to a supervisor.

    In some, but not all cases, the supervisor may also be fairly new, or may have spent very little time working the system before being promoted to supervisor. If you sense that the sup isn’t being much help either, demand to talk to THEIR supervisor, or at least to a different sup who has more experience dealing with difficult cases.

    The best time to call is during a week day, NOT on a Monday, and NOT first thing in the morning. If you call on a Monday morning you will probably be on hold forever. If you call late at night or on the weekend, the same thing is likely to happen. You will be dealing with a skeleton crew during the nights and weekend hours, and often times those people are the lowest on the totem pole, which means they are likely not to know what they are doing, either. Also, the night and weekend supervisors, in my experience, were not the brightest bulbs in the pack.

    It’s a terrible, sad situation that you are in. My husband and I were both deeply frustrated, on a daily basis, by the things you describe happening with people’s medication. Again, I’m so sorry this has happened to you. I hope my suggestions will help.


  4. I am so sorry for all the struggles and pain you are in right now. Does swimming work for you? I know it is a very different condition, but very gentle swimming is one exersisie that doesn’t seem to send me into a fibro flare and also soothes my soreness when I am sore.
    I am sorry for the news about your friend, my heart goes out to you, and to her and her family.
    I hope today is a better day for you.

    Liked by 1 person

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