surgery

Can I Offer You A Hot Towel And Some Crumbs?

Posted on by akiwifreund

Thursday was a gorgeous day by Minnesota standards in September. It was bright and sunny, no clouds or humidity, warm enough still to wear sandals and short sleeves. I caught some pictures of flowers and bees and captioned them #winteriscoming (because I’m not fooled – this is, after all, Minnesota, and if you can’t tell, the second one contains a bee):


I had just settled back in my bed after the short bus had shuttled me to my errands when my cell phone rang. The ID said it was the U of MN clinic. I thought at first that it was a reminder for my appointment on Monday, but usually I get those on my home phone, so I quickly dismissed that thought and picked up. It was my orthopedic doctor – not his nurse, but the actual doctor who has been dealing with my left shoulder. I couldn’t help but immediately be on guard. He said my MRI results were in and that I indeed had a significant tear in one of my tendons and also in a labrum as well as tendinosis, and that I had choices: I could go on anti-inflammatory meds, I could get steroid injections, I could continue with PT, I could get a surgical consult. I asked him if he could do an injection on Monday when I saw him. He asked me if I would be okay until then.
WHAT????

I’ve been breaking my teeth for months now and begging for help and begging for an MRI, and he’s suddenly worried about me being okay for a few days now that he’s discovered that I have some significant tears?

Someone get this man a medal.

I asked him if he wanted to delay my appointment past Monday for some reason. He said no. I told him that I had been in pretty terrible pain up to that point, so what did a few more days matter? I’m not sure what he was offering besides that because he didn’t say, “Hey, I can make room for you during the day tomorrow,” and he didn’t say, “I can call in a prescription for you to try to make you more comfortable.” He just said, “Okay, if you don’t have any questions, then I’ll see you Monday.”

I have no idea why he called unless he was just trying to shave some minutes off of our appointment time on Monday so he could have the needle ready. Maybe he was trying to make himself feel better.

Without histrionics, I will say to him, “I told you so.” I will have a question for him on Monday, and that will be this: Do women not get tears in our tendons in our shoulders? The answer of course is of course not – obviously women do get tears in our tendons. We just have to do a lot more to be believed, like dragging our limbs behind us in a wheelbarrow.

Rare + Rare = Still Rare

Posted on by akiwifreund

Yesterday was generally a non-productive doctoring day for me. I went to see a neurologist in a different medical system outside of the ones that I have tried just to see if I could at least get an acknowledgment that what I’m dealing with is not that idiotic label “facial weakness” that the U of MN doctor put in my file. Besides trying to work towards a diagnosis, I’m also trying to build my case for disability, and I keep hearing my attorney’s voice in the back of my head saying, “If you don’t get a diagnosis by the time you are sitting in front of the judge, you’re screwed.”

The neurologist was very friendly and open, and definitely had the approach of working with me as part of a collaboration rather than dictating to me. However, we still had a breakdown in communication. She could not wrap her brain around the concept about why I have a shunt in the first place (and indeed is the same barrier for 99% of the doctors I talk to even though I explain to them that the shunts were placed because my symptoms improved temporarily after receiving lumbar punctures 12 hours apart). Almost all doctors incorrectly jump to the conclusion that my face is drooping because I’m overdraining – as if the fluid is pulling my face down with it, like I am living out a Salvador Dali painting. It’s easier for me to explain the shunts and the failures and the symptoms to people who have absolutely no experience with this world because they have no expectations and no preconceived notions (except for the asshole armchair “experts” who don’t know shit but think that watching a few episodes of “House” have made them suddenly intellectually superior).

Because this doctor had wonderful bedside manner, I made sure I took the time to assure her that her inability to give me a diagnosis or a direction was not her fault or a failure on her part as a physician. As a matter of fact, she was doctor #50 in six years, and I told her that too. The combined look of horror and chagrin was a bit comical. I gladly accepted her recommendations for a pediatric neurosurgeon (because sometimes they take the most complicated adults) as well as a rheumatologist she thought would have the best bedside manner, so all was not wasted on that visit. I also explained to her that I would be attending the national hydrocephalus conference June 16-19 being held here in Minneapolis and that I had t-shirts printed:

This week another one of our relatives passed away. His niece happened to contact me through 23 & Me, where I have an account set up after getting my genes tested last July; I wanted the cheapest way possible to get them set up in a database while I tried to figure out what is going on with my body and just how rare it really is. It turns out that this relative of mine has a daughter who is also super rare, truly one in seven billion! It’s so rare that they actually had to formally name it: Hemolytic Anemia Medicine Lake. The “Medicine Lake” portion of the name refers to the area that I and a large portion of my extended family grew up and lived in in the western Minneapolis area. Unfortunately it’s not in any way similar to what my problem is so I can’t go to the NIH and tell them to link our cases, but we definitely hit the rare disease lottery in this family.

By the way, universe, I’d like to win the LOTTERY lottery.

And I won’t be going back to this neurologist, as nice as she was, because she described herself as a “neighborhood neurologist.” She said that she was a step or two down from the facilities where I had been trying my luck, and this was way over her head.

Senior Hours

Posted on by akiwifreund

I fell asleep last night somewhere between 8 and 10 pm, and that is as close of a window as I can get. As I said to one of my short bus drivers this week, it used to be a sign of weakness or a lack of social life if I ever changed to pajamas before midnight; now I think it’s a late night if I’m not comfy by 9:45 pm.

I’m turning into my parents. Maybe I even skipped a generation and went straight to my grandparents.

The trade-off is that I’m also not sleeping long or late. Most mornings now I wake up in agony at around 3 am because my right hip is burning (not at all fibromyalgia pain, so I’m thinking it’s the Lyme), or my left shoulder is angry. I had to sleep on my left side for three years because all of my surgeries used to be done on my right side, so I’ve got a nerve impingement that I’ve had to do shoulder rehab for twice already in four years. It’s not responding to the exercises I have memorized and it’s now doing a weird thing like it’s popping out of and then back into socket. I finally broke down and called my primary care doctor’s office yesterday to get set up with PT and pain management.

As I hunker down in the early morning with my cough drops and water and browse through my WP Reader, a thought strikes me: I no longer think in poetry. I can no longer bear to read poetry.

I think pain has rewired me so that I avoid the most descriptive and flowery words, or think of the significance of pauses and stanzas. I am in the economy car. I want the most efficient features possible for my money (aka time). I want to get in and get out.

And I want people to rethink their use of commas.

I hope that when I’m not being driven by pain, I can return to the imagery and thoughtfulness of poetry, because I know there is some fabulous stuff being put out there for all to read. I don’t want to forever close the door on that appreciation. (However, my stance on the proper usage of commas will never change.)

Speak Easy

Posted on by akiwifreund

Last week Friday, February 5th, Nikki (http://ilivebreathe.com/) and I had our first chat on Blab. The agenda was to talk about toxic people, the diverse challenges we face when interacting with them, and when to let them go. The recording went much longer than we planned at 1 hour 45 minutes, but if you are interested, here is a link to the show:

https://blab.im/82740adeac204a028576bc288ef25703

We decided to come back this week with another show, and this time the topic is self-care. What do you do to bring yourself back from the pit of despair? Do you allow yourself to laugh or cry? If you have seen the movie “Amelie” (French with subtitles), you know that each character is assigned a list of things that seems like a very simple pleasure. Amelie’s father likes to take all of his tools out of the toolbox, clean out the box, and very carefully put the tools back in. A patron at the eatery carries a mini tape recorder with him everywhere, and then records unusual laughs. Amelie likes to stick her hands into barrels of dried peas.

What do you do to make yourself feel better about your circumstances?

Join us on Blab for a discussion on self-care; we’ll start at 6 pm EST/3 pm PST Friday, February 12th.

https://blab.im/nikkiseefeldt-sickadilly-chat-2-self-care-strategies-rare-dis-disability-chronic-illness

Seek And Ye Shall Find

Posted on by akiwifreund

Yesterday didn’t strike me as being especially significant. It wasn’t a holiday and my rare disease wasn’t cured, so…

Okay, first of all, I’m paying more attention to the things that bring people to this little blog – and I do mean little. Six months ago I was lucky to get three visitors in a single day. Now my number of visitors is increasing because of the ways that I am networking with other bloggers and the content that I am including.

Nothing could prepare me for some of the search terms indicated by the program, though. (You’re welcome.)

*where does horny women hang in nashville
*fragile handle with care advertise porn
*pantyhose kik names
*stocking fetish social sites in India

Congratulations, and let your freak flag fly. There’s no way for me to identify the people making these searches. I have to point out, though – no one searched for hot, bald, unmarried women?? I mean, it’s been a while since I’ve been proposed to by a total stranger. I hope that issue remedies itself shortly.

In the evening yesterday I took the short bus to a guided meditation session held in a health crisis center. I wasn’t sure how it would go because I tend to just kind of throw my hands up in the air and then rush onto the next thing, whatever that is, to keep my brain stimulated because I get bored easily. During the actual meditation, which really only lasted about 20 minutes, I had to fight against dozing off twice, and luckily I didn’t snore or accidentally pas gas.

Twice I saw an orb rise out of a pool. I only “saw” it to the left of my left eye. I told some of the attendees during our recap about my experience and let them know that their vibes had a specific effect on me. One woman asked me if I had always been able to read strangers’ energy. I have, but I have never really put effort into following through on what I read; usually I push it away or ignore it, which is actually very destructive because then everything gets a free pass into my life and I end up hip deep in crap.

Whatever happened, the universe made a connection appear for me. My short bus driver made a stop after mine to pick up a lady in a wheelchair. She greeted me when she was lifted into the van, and immediately we started chatting. I asked her if she had just come from a dance performance because the building she had come out of was a theater specifically set up for that purpose. The answer was no, in fact; she was on the board for VSA Minnesota, the “state organization on arts and disability” (I got that from the website).

I told her a bit about my arts background as well as what I’m doing now (which is admittedly very little because my days are consumed by endless doctor appointments), and she gave me three organizations to get involved with besides her own to network, meet new people, be creative, and maybe even apply for a grant in my area of interest.

To the casual observer, this may not seem to be a big deal. It just drove home to me the fact that this state is so much more inclusive than where I moved from. I never, ever would have had so many resources to access for my particular physical challenges if I would have stayed in Arizona. I wouldn’t have been able to even ride the short bus because of their strict rules regarding who should be allowed to ride.

Really, meeting and speaking to that woman last night helped to open my eyes to the fact that even though I’ve got these major problems, I might actually be able to find a group of people who can see art where others may only see injury and illness. I am still working on retraining my brain to accept this as my new reality because the doctors have refused to keep operating on me. I still really miss driving my car while harmonizing at the top of my lungs.

Product Review for NatraCure

Posted on by akiwifreund

This is a review for two different products offered through NatraCure, a company that focuses on various products to support pain control. The really great thing about their site is that you can choose an area of your body that you would like to focus on – neck, foot, ankle, back, etc. – and they narrow down the product choices to the ones that are most appropriate for that particular area.

http://natracure.com/

The first item I’m going to talk about is the Soft Gel Toe Stretcher and Exerciser. The material is incredibly flexible, and is actually infused with “7 botanical oils: avacado, olive, jojoba, grapeseed, canola and soybean.” They take it one step further with adding “green tea, willow fragrance and aloe vera.” I am telling you, if you have a cat or dog fascinated with your toes, they are really going enjoy your feet after you’ve had your toe stretcher on because it has such a pleasant smell.

These are very easy to get around your toes because of their flexibility. Pay attention to the instructions and the warnings. For instance, it’s NOT good to let the stretchers be on your toes for more than 10 minutes. The packaging says that the product is “diabetic-friendly,” but at the same time, it’s important to know your limitations. This does restrict blood flow to the toes a bit, even with the flexibility, and that is exactly what diabetics (and patients suffering from gout or good ol’ edema) need to be aware of. Even people with no issues with swelling or stunted blood flow should not go past the 10-minute time limit. Be kind to your feet.

My issue is that I’m in bed for about 22 hours of every 24 hours, so I’m having problems with the tendons in my feet shortening and stiffening. My big toes also tend to bend sideways as if they have been crammed into the toes of pointy shoes from the ’80s. These stretchers are fairly comfortable to wear. I’m not sure if they will help my big toes with realigning, but I’m going to keep using them daily.

http://natracure.com/body-part/foot/gel-toe-spreaders.html

The next item is the Magnetic Shoulder Support. I was warned before it was shipped to me that females who tried it found that it was too large and the “one size fits most” fit them poorly. I explained that I’m a good Midwestern woman raised on corn and built like a horse, so I doubted that I would have a problem with the fit.

The middle picture is the sling laid out flat and inside out. To wear it, you put the white stripes against your shoulder, then fasten the cuff around your arm with opposing Velcro pieces. The long, skinny part travels around your front and back and is closed with opposing Velcro pieces under your arm that is not being “treated” by the magnets.

This was fairly easy for me to put on. I estimated how tight I would need the sleeve, then slipped my arm and shoulder in, then closed the flaps under the other arm. However, I could see that if someone has mobility or fine motor skill issues, they might need assistance putting this on.

As predicted, the piece fit me just fine. One thing to be aware of, though, is that the fabric is 75% Neoprene (the same material divers use for their wet suits) and 25% Nylon, so right out of the package, there is an overwhelming chemical smell. I am particularly sensitive to chemicals and so I found it necessary to hand wash this before wearing it.

I wanted to try this product because for three years, all of my surgeries were done on the right side of my body, so I always had to rest and sleep on my left side. My shoulder really took a beating. I had to go through two rehab series because of an impinged nerve, and I could stand to go through rehab again – but I remember all of the exercises, so I’m trying to take care of it at home.

The idea is that the magnets (1,000 Gauss each) combined with the fabric that provides gentle compression will possibly “help stimulate blood vessels and blood oxygen levels and may help speed up the natural healing process.”

After wearing this for five days and up to four hours a time, I have not noticed an improvement in my range of motion or the pain. I don’t think that wearing it is doing me harm (I take it off for my rehab exercises), so I’m going to continue strapping it on for another week or two. It’s possible that it will be an appropriate treatment for other issues with the shoulder; I can only talk about what is affecting me directly.

The Magnetic Shoulder Support can be used on the right or left shoulder because it’s designed to be interchangeable.

http://natracure.com/body-part/shoulder/magnetic-shoulder-support.html

This seems to be a great company that is focused on care for our most common trouble areas. My interactions with them have been pleasant, upbeat and thorough. I wish them every success as they continue to test and add products to serve the acute and chronic pain communities.

Modern Love: It’s Not Only Me

Posted on by akiwifreund

In early 2008, shortly after I had knee surgery, I let a new friend talk me into hitting the bars in Tempe to go dancing. It was laparoscopic surgery so it was pretty non-invasive, but I had all kinds of problems. They had already taken 2 litres of fluid off of it over the course of 3 visits, and then when I had too much fluid taken away, I had to have non-chicken-based synovial fluid injected in (I’m allergic to raw eggs). It took me an entire year to be able to straighten out my leg, even after five months of physical therapy.

Anyway, I digress; I went out for a night of dancing. Already I felt much older than everyone else at 34, when most of the crowd was 21-23, including my friend. Let me tell you, those young boys were not shy! One guy was just about stripped down from the waist up and he decided he was going to bump and grind all over my booty. I had to tell him to calm the fuck down because of my bad knee, so he just decided to hold onto my hips tighter while he pretended to bang me from behind.

I finally got away from him and had about two songs before a tall, lanky, tipsy drunk young man started dancing on me. I had an even harder time with him! He kept banging into my knee. After a while, I had enough. I convinced my friend it was time to go.

I didn’t know my friend did this, but she would read the “Missed Connections” portion of Craigslist for entertainment. She called me one night and said, “Holy crap, C., this is you!!”

Sure enough, a guy, aged 24, considered me a “missed connection” – meaning I didn’t give him my phone number when I headed out, basically. In the ad he wrote about how he “protected” my knee from everyone else. (Drunkass, you did no such thing.) I emailed him back and we traded a few emails, but I couldn’t pretend to be very interested. He was still at the binge-drinking phase.

The very first episode I listened to on Modern Love: The Podcast had to do with one woman’s experience with the “Missed Connections” section. It’s a short piece, especially if you just listen to the story and not the interview afterwards.

https://www.wbur.org/2016/01/20/missed-connection-modern-love