doctor

Would You Like Some Abject Poverty With That?

Posted on by akiwifreund

I left a message yesterday with my apartment manager regarding my lease, which is ending on May 31st. I had signed a notice and turned it in on March 17th indicating that I wished to stay another year when my lease expired, but I haven’t heard anything since then, and we don’t have many days left until the end of this month. I have a certain amount of money in my bank account from the sale of my car that I have been using for living expenses but I figured that if I was going to sign another lease, the apartment manager wanted to see proof of income or a certain amount of reserves in the bank, so I decided to call the administrators of my 401k to pull all of the funds and close it out.

The simple act of getting on the phone causes me anxiety. In all of the jobs I’ve held over the years, I used to field anywhere between 50-100 calls a day, so just know that that’s highly unusual for me to dread picking up the phone and try to figure out what to say without fumbling.

It’s also unusual for me to not have one or two or three jobs simultaneously. The 401k is my last lifeline and the only thing standing between me and homelessness. Right now I have to operate under the assumption that I will never have any money coming in ever again because I have no idea what the outcome of my disability hearing will be in 2017.

The call to the 401k plan administrators only took a few minutes. The first representative couldn’t confirm or deny which penalties I would be subject to, even though my CPA said that I could probably avoid a 25% and 10% early withdrawal penalties because of my indefinite disability status. A second rep – presumably the guy who did the calculations and released the funds – advised me that he had to take out a minimum of 20% for taxes and that I should set aside an additional 10% for penalties, all in a blaring and bored voice, as if he heard this stuff all the time, as if it wasn’t a big deal for me to have no other choice.
I have a few big purchases coming up. First, I have to take care of a crown and root canal completely out of pocket because medical assistance won’t pay for any of it. Second, I need a new bed; this one started to sag about five months after I purchased it last year because I spent so much time in it, but the store wouldn’t cover it under warranty because I moved out of state and the manufacturer would only cover a small percentage (this time around I’m going for the bargain Sleep Number C2 – no inner springs and it costs the same as a traditional inner spring bed). Third, I want to buy a different a/c window unit because the one that was provided with the apartment is gross and inefficient.

After those purchases, I will have to live off of the same amount of money slightly more than what workers make at minimum wage in the U.S. I don’t know how people do it. I don’t know how I’m going to do it. It’s not like I can go out and get more jobs, or a better job.

This is the song of our people. Poverty. Desperation as our bodies shut down, especially in my case (and others out there) when I don’t have a name to attach to it or a prognosis to go by. My counselor has told me not to think a year ahead and allow myself to be swallowed up by the fear of what comes after the money runs out, but how can I not think about that? My life is already so different than it was even just a year ago; I can’t even whisper the words, “How much more can I lose?” That’s like setting up a new dare to the universe.

Hanging up with the Merrill Lynch rep, he wrapped up the call with the requisite, “Is there anything else I can help you with?” The old, working me would have awarded him 10 points for asking the question. The new, disabled me wanted to tell him to suck my ass.

Waiting For The Mother Ship

Posted on by akiwifreund

Last Wednesday I went in for a procedure that was new to me, and quite frankly, I didn’t hold out much hope for as far as its success rate went. It was a transabdominal plane (TAP) block. My pain doc, who is fairly close to me in age, very serious, sober, and I suspect severely depressed, hoped this TAP would stop the nerve pain that I get as a result from the allergic reaction to the drainage catheter that winds around my abdominal area. He thought my pain was from my abdomen being cut so many times from all of my surgeries. I indulged him because quite frankly, I’ve got nothing better to do.

When I arrived at the outpatient surgical area, I changed into the ugliest shit brown gym shorts ever, and got a matching pair of shit brown hospital socks with rubber grips for fall prevention. No way would anyone willingly steal these digs (with the exception of one lovely elderly lady who declared them exceedingly comfortable, I was told). I had three nurses ranging in age between 50 and 68 (I’m guessing), all slightly fussy and calling me honey, and addressing me in a loud volume with small words as all surgical nurses are accustomed to doing when coaxing patients out of anesthesia. I was awake and responsive the whole time, but it’s hard to break a habit that takes decades to build.

We discussed all of the yellow on my chart – meaning all of my allergies. We settled on a chlorhexadine scrub rather than a betadine solution to prep my abdomen because of my allergy to shellfish. I watched as my doctor put a long sleeve on the ultrasound paddle that would help guide the needle that would deliver the meds, as he rolled it down and secured it with a rubber band, and I asked, “Oh, is that an elephant condom?” The nurses twittered and the doctor chuckled. Then the nurses got in on the game and tried naming a few other animals with especially big penises. Then we got serious again because it was time to stab me.

The doctor applied some ultrasound gel and pressed the paddle to my abdomen. The nurse at my head put her hand on my shoulder and I closed my eyes. My doc warned me that I would feel the poke and burn. I focused on my heartbeat and forcing it to beat slower, and as if from far away, I heard the nurse say close to my ear that I could squeeze her hand if I needed to. I whispered “No” and refocused again on my breathing. I could hear my heart on the monitor slow down. The doctor said something about enlarging the picture, then needing more “puffs,” and then he finally said he was done and he was going to withdraw the needle. I opened my eyes and my heartbeat increased again, and I saw him pull out a needle that was about four inches long that was attached to a wire.

We did it all over again on the other side: gel, paddle, breathe, focus, heart rate down, needle, pain, puffs, out. I had to have paper tape with gauze over the insertion points because I would have been allergic to what they usually use for gauze pads. The doctor told me afterwards that he had never seen anyone’s heart rate go down as he was inserting the needle and the meds – usually the opposite happened. I told him that I learned a few things from meditation.

I didn’t pay it much mind, but almost immediately, I had developed hives at my insertion sites. I was supposed to keep the gauze on for 24 hours so I didn’t see the hives until the next day. As far as pain relief goes, I didn’t feel any by the time I received a call at noon, but I noticed I had some at about 5:30 that night. However, by Saturday I was laid low by pain again. I emailed my doctor and his nurse to let him know about the hives as well as the ineffectiveness of the block. The hives did not appear across the entire area that they prepped so I know it’s not a reaction to the chlorhexidine – at least I still have that as an option.

If my doctor is depressed, I can understand why. I would feel the same way if I had patients like me.

And whatever this new allergy is, it’s really just another sign that I’m not a native to Earth and that I need to send a signal flare up to the mother ship to scoop me up.

Grief and Acceptance

Posted on by akiwifreund

Every other week I am in my counselor’s office, and there seems to be something new that brings me to tears, which drives me crazy. I can’t figure out why I am crying so much. I mean yeah, I have experienced loss on a major scale in the last nine months – my sister, my friend, my uncle, moving states, losing my job, losing all of my doctors, losing my option for more surgeries – but I keep thinking that I should be adjusted by now. But reading this post by my fellow blogger reminds me that I keep experiencing loss and that I still have a sense of instability. Since my U of MN doctors insist that I don’t have Lyme, I have to go through the long process of getting set up through the NIH rare diseases unit and make arrangements through Vanderbilt University to be studied there, as they have locations designated throughout the country for patients to be screened. In the meantime, I have to continue with my treatments with my naturopath, even though I have NO IDEA if it’s the right thing to do.

In addition, I’ve been given the option of getting a TAP block in my abdomen with the hope that it will relieve some of the nerve pain that I’m having from being allergic to the drainage catheter from the shunt. The doc is going to numb nerves on both sides of my abdomen leading to my lower belly. The kicker? I have no idea if it’s going to affect my sexual functionality. And I’ve got a brand new boyfriend. And I really like said new boyfriend and I want to jump him every time I see him. And I don’t think it will be fair to lose what little functionality I do have, because who knows how much longer these good years of responsiveness are going to last? It’s asking a lot of a new boyfriend to possibly give up intimacy for an unknown period of time (forever???); I mean, I call him The Saint Paul, but Jesus H…I don’t know, is there something that is a step above sainthood? If I lose my ability to orgasm, that’s gonna take a LOT of mourning. Maybe some booze and mood stabilizers. I’m already stressed out about possibly taking out the shunt permanently because it’s clogged and I’m allergic to all of the shunts, which means that I may be stuck laying down forever and can’t be up for even an hour.

In closing: Send kittens and puppies and rainbows.

+ + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + +

Wendy's avatarPicnic with Ants

When people think of grief they often think of death, they don’t think about grieving over other significant losses.  Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.

The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance.  Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next.  This is no longer thought to be true.  It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.

The The British Journal of Psychiatry Nov 2008, published a study on grief and acceptance.  The authors note that “disbelief, yearning, anger and sadness may represent aspects of a single underlying psychological construct – grief.”…

View original post 563 more words

It’s Not Easy Being Green

Posted on by akiwifreund

I thought I had a diagnosis. In fact, I thought I had THE diagnosis: Lyme, picked up seven years ago on a hike down into the Grand Canyon, yadda, yadda, yadda. Don’t get me wrong, I still have it.

However, after seeing a physical therapist, a pain management specialist and the neurologist who specializes in movement disorders at the U of MN, they are throwing me back in the rare pool. They have never seen anything like my symptoms even with the confirmation of the antibodies particular to the Lyme bacteria. The PT and the pain management doc both marveled at my party trick, which is to lay flat or tilt my head so it’s perpendicular to the floor, which moves the fluid off of the area where it’s pooling when I’m upright and I can move my face again. The neurologist refused to evaluate me and instead scheduled me for an EMG of my face and head. Good thing I am a baldie, because it will be easier for the doctor who performs the EMG to easily find landmarks and previous poke marks. They want to rule out myasthenia gravis (again).
I’m now getting a little overzealous on recording my symptoms again. I know of a couple of people who developed POTS at the same time as their Lyme infections, and so now that’s on my radar too. But the issue with the CSF is really puzzling.

I signed up for a “scholarship” through the Hydrocephalus Association so that I can attend the hydrocephalus conference at little or no cost, which just happens to be going on about 10 miles from me (as opposed to another city/state) in June. I had to provide information as to why I was asking for the scholarship. I refrained from saying “Because I’m a freak of nature” but I did indicate that I would like to know if there are any new shunts out there that I wouldn’t be allergic to, or discuss possible advances in surgery and technology that would allow me to get an operation to fix the issue instead of having to implant a shunt at all. I’m hoping that some of the doctors attending will be interested in my demonstration about shifting the CSF away from where it’s pressing.

Oh, and I deactivated my OKCupid profile. I’m getting to know the man who considers himself a feminist – you know, right up my alley. So far no red flags, and he actually follows through on being a decent human being. Small children like him. He volunteers at an animal shelter. First and foremost, he’s nice to me.

Spare Some Change?

Posted on by akiwifreund

This morning started out with crazy pain. I’ve had 18 years of fibromyalgia pain, and I have to say, that’s child’s play compared to what I have going on in my abdomen. I had an appointment with a new pain management doctor this morning, so the crazy pain at least had good timing. I had to explain all over again why it’s happening (I’m allergic to the drainage catheter of my shunt, which goes down to and loops around in my abdomen), and endure the doctor poking and prodding my stomach and bending and lifting my legs. Big, fat tears were leaking out of my eyes. I begged for a change in meds.

What I have to do to transition from one medication to another is slowly decrease one med over the course of two weeks, and then begin a new medication and work up to the full dosage over four weeks’ time, so I have to commit six weeks to focusing on getting this right.

Really, it’s not different from anything that’s a change. I need to also change my food intake. No dairy, gluten, soy or sugar means some big adjustments in what I eat and when. I really have to plan and think out the simplest things, because I’m not going to be able to grab a hunk of cheese as a snack and instead I have to have something readily available that falls within the much smaller parameters that I’m stuck with.

Kira’s blog on change is so timely for me. She talks about the process we logically and methodically use to incorporate the change into our lives, and what makes change successful versus a total and utter flop.

I wish someone could diagram for me a plan to successfully avoid chocolate.

http://www.kiralynne.com/#!Change-is-Challenging/caj6/56dc66a90cf22ade6d35e40e

Now You See Me

Posted on by akiwifreund

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis