At a recent doctor’s appointment, I was invited to “kick off my shoes and stay awhile”. Now I don’t mind this doctor or his staff, however I’m not really wanting to get comfy in the doctor’s office for what should be a wee visit. I guess that’s a bit rude of me.
I didn’t kick off my shoes, but I knew I was going to be there awhile regardless of my shoe status. So I settled in for a long wait and a long visit. And true to form after a lengthy wait, the doc and I had a long visit. A long visit with lots of medical terms and numbers. Not exactly my idea of fun, but a requirement when you have a chronic illness like lupus.
And after my long visit, I went on a longish drive to empty my head. Because sometimes when you have a chronic illness like lupus, you need to just empty your head and simply enjoy your surroundings. A long visit with a four-footed friend is also ideal.
And I promise things will go back into your routine after one of those visits, because it does for me too. Until the next time I am invited in for a long visit without my shoes. Which is all part of chronic illness and life.
As he looked at my bluish fingers he shook his head and sighed. My specialist had called me in for a “meeting” after my last wee visit to the hospital. I am loath to go to the hospital and get a sinking feeling every time they tell me I get to “sleep over” because I’m just not that into hospitals. Except I am because I have a chronic illness that doesn’t want to behave.
After my last stay, a follow-up message was sent to my specialist indicating that I had some vascular issues in my hands. Lupus is one of those gifts that just keeps giving and one of the gifts it always provides me with is something known among my friends as corpse hands. To the medical community it is known as Raynaud’s. To me it’s just cold hands for the most part, occasionally brilliant red and sore fingers, but mostly purplish blue and cold fingers.
The doctor who wrote the follow-up message thought that perhaps if my specialist addressed my Raynaud’s (I guess we will move on to using formal words for proper addressing of said entities), I would not have been in the hospital as long while they tried to resolve my cold hands even though I told them that’s just the way things are.
When he looked up my specialist said, “sometimes you pick your battles and other times the battle picks you”. The cold hands aren’t in my head, there is a medical condition for this and there are things that can be done and are being done to try to keep it in check. However, not everything gets tidied up nice and neat at the end of the day. Lupus doesn’t play well with others and so we have to balance all things for the best outcome. Which for me may mean cold hands most of the time.
Now and then I have to deal with this thing called an Insurance company. They help cover the cost of my chronic illness. Or so they say. Sometimes it feels as if they are trying to kill me instead. I can’t say I’d blame them given the nature of the business they are in. I cost a lot of money to keep alive.
Today just happened to be one of those days where I had to call the Insurance company. I’m sure the lady I first spoke to is a lovely person and she was only doing her job. Which apparently is to make the chronically ill and somewhat frustrated patient jump through six hoops which gradually decreased in size.
When I managed that feat, I was passed on to a man who told me point-blank “it’s people like you that make premiums go up”. Well thanks, I thought. I needed that. Must be my new super power. He wanted me to jump through flaming hoops while juggling sharp knives. If I couldn’t do it, he would deny my claim for coverage of a medication. That a doctor, actually specialist, prescribed.
Now stop and think about this. I am being asked to basically kill myself, through the sheer exhaustion of these mental exercises just to get coverage for something to keep me alive. And the kicker? The more exhausted and sick I get; the more medications will be prescribed which will require me to join the circus full-time.
Today I managed to get the required coverage for the medication. There will come a day when this won’t be the case. And then I will have to consider the options of paying on my own for the medication at the cost of bankrupting myself and then not being able to pay for anything including my medication or skipping the medication, so I can cover other bills for housing and food and dying because I cannot get the medication required to keep me alive.
Next time you see a juggler consider that those of us with chronic illnesses, especially the expensive kind, are performing these feats on a regular basis just to stay alive. Each of us wondering what will happen when we can no longer manage that many sharp knives or itsy-bitsy hoops of flames while riding a unicycle backwards. Because my friends, that’s how the Insurance company makes me feel. Now if you will excuse me, I seem to have dropped my red nose somewhere and I need it to get into an impossibly tiny car with some of my other friends who happen to have large feet…
I broke a plate today. It slipped out of my hand and crashed onto the floor, shattering into several large shreds and a few smaller pieces. Thankfully the four-footed one wasn’t interested in the new mess I made or I would have had more than just a broken plate to clean up.
I confess I was a little upset about this event. Now my world will not end because I broke a plate. Rest assured the plate is not a family heirloom or anything of that nature. It was just a plate. A plate I’ve used countless times. As a matter of fact, this plate was chipped and the color was slightly faded.
I was upset because breaking the plate meant having to clean the mess up. It meant acknowledging that something routine and easy for most to do, for a moment in my life was a bit of a challenge. And as I cleaned up the broke plate, I was reminded that I am a bit like this plate.
Obviously, being chronically ill, helps make me feel broken at times. But no one remains wholly intact in life. We live, we love, we hurt and we laugh and through it all tiny pieces of us break off. We become a bit faded and sometimes, sometimes we fall and break. Now and then when we break we get put back together, jagged pieces adhered again and yet not the same as they were before.
And broken, chipped or faded doesn’t make us any less. In fact we are more than for these experiences which have brought us to this state have filled us with new ideas, thoughts and learnings. Some of us just seem to crumble or break more easily.
The problem with lies is that hey eventually collapse under their own weigh. Or they unravel in the most spectacular way. It’s easier, in life, if you just tell the truth; honesty is the best policy. And I know this, yet I lie.
I have had lies collapse under their own weight in the most horrific ways. And I’ve had them unravel like a poorly sewn hem on a skirt. Again in the most spectacular ways.
One would think after having dreadful experiences one would avoid doing the very thing that created the experience in the first place. Or so one would think. Apparently that one isn’t me.
While at a doctor’s appointment, one in which I was reassuring my doctor I felt perfectly fine (let’s face it with lupus perfectly fine is in degrees) my eyesight in one eye went all wavy and my eye started watering uncontrollably. Apparently other than my lupus flush I went entirely pale. And I ceased to make sense while speaking. But everything is fine right?
Needless to say my doctor didn’t listen to the whole perfectly fine bit I lied about. And now I have more tests for what is going on. The sad fact is the eye watering thing has been on and off for a bit, I chose not to share that with anyone. I haven’t had the speech issue before . I may have had the wavy eyesight issues temporarily before (yeah I know open and honest).
Once we’ve unraveled my health issues and if they are lupus related, I hope to unravel why I continue to deny how I’m really managing with my disease. I know part of my issue is not wanting to burden anyone with my health issues. I also know to a degree I don’t want to deal with my health all the time. But why on earth do I do this with my medical team? Yeah I have to unravel this.
Sir Winston Churchill supposedly said “when you are going through Hell, keep on going”. I guess he decided Hell was not a place to stop, rest, do some sightseeing and basically get trapped. Pity I heard about all of this after I made my foray into Hell. Or as I like to call it Insurance companies claim departments.
Seriously, if you have a chronic illness like lupus, and take medications such as I do, you inevitably end up in Hell. It’s starts off with a simply phone call, afterall surely they have misunderstood something or made a mistake while processing your claim.
When they put you on hold the first time, you descend a little further into Hell. No amount of breadcrumbs dropped as a trail will help you. This is Hell after all. And the fun is just beginning!
After the first hold there is the questioning about if you really need the medication and such. And then the transfers and demand for further paperwork. And down you go, further into the one way path in Hell.
If you are lucky some of the required paperwork will have to come from a doctor or specialist. These are the people who can rescue you from Hell. But it may cost money and of course the deeper the level is that you happen to be on, the more it will cost or the longer it will take you to get out.
Perhaps instead of going through Hell you could get a pass, after all you are dealing with a serious chronic illness. Surely that is more than enough.
I wonder what it’s like to be full of energy. I would jump out of bed, easily accomplish everything I wanted to do, go to work and keep up with all the adventures the four-footed one wants to take. I’d marvel at how much one can do in a day.
Of I haven’t jumped out of bed in years. And I have no clue what I’d do if I got done everything I wanted to within the day. What on earth must it be like to not have a list of some sort just waiting for you to get to?
I used to be that girl, the one who had a far amount of energy. I used to be that girl, the one who could easily tick things off her to-do list, or be up for a visit with friends. (Granted there was still a limit to how much energy I had.)
But that was before. Before lupus demanded attention. Attention and energy. Lupus is selfish that way. You may have a mile long to-do list but lupus doesn’t care. When lupus wants you to stay in bed, lupus makes getting out of bed super hard to do.
I used to think my dishwasher, the machine rather than a person, was a nice-to-have item. Since lupus I’ve come to the conclusion that it is a must have. I only ha e so much energy and strength and I rather not spend it on dishes when I could be spending it with people I enjoy.
I wonder what it’s like to love someone so much and watch the, struggle with a chronic illness like lupus. To watch them struggle to get only some of the household chores accomplished. To have to pick up the slack for that person. I wonder how Beloved does it, and does it so easily and gracefully. I wonder how he doesn’t get upset, surely he just resent lupus at times. And yet he just keeps going, like he Energizer Bunny. And I, while when I can I struggle along or let him carry me along.