Pain

Hit Me Baby One More Time

Posted on by akiwifreund

Today I had another dental appointment, my second for the week. I had thought this would be the “easy” appointment because we were just fixing a broken filling in the back right bottom tooth, part of the whole series of fixes that are a part of the issues that are being caused by me clamping my jaw in my sleep and cracking and breaking all of my teeth because I’m in so much pain.

I should have known that the first bad sign would be the pedestrian who walked out in the middle of the road without warning. My cab driver slammed on the breaks and left us both gasping, and then swearing at him; he just strolled slowly as if he didn’t care that he had just tried to compete with a couple of tons of metal and his human body sure would have lost if my driver would have been any closer whilst trying to slam on the brakes. Maybe he was tired of his life and thought today was a good day to die. Maybe he figured he was just a short ride from five different hospitals and it would be a couple of free nights of room and board with painkillers as the cherry on top. Whatever his reasoning for being a jackass, I was ready to open my door and beat him with my cane. Fortunately for him I was running on 80% blindness, a torn left shoulder cuff and an appointment to keep.
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I was called back for the appointment and the assistant introduced herself as Brittany. After she got me set up with the bib and the ugly-ass biker sunglasses (because that’s all the rage now, for dentists to put safety sunglasses on their patients while they drill and shine bright lights in our faces – but really I think it’s so they can’t see us crying), the assistant dentist came in to start me on the Novocaine shots. She informed me her name was Brittany too, so I was officially being worked on by two Brittanys. Yea for something easy to remember in case I had to yell!

The assistant dentist put the swab of numbing gel in my mouth and I thanked her, telling her that the main dentist didn’t do that at all on that side for me on Tuesday. I said I believed that he was trained in a war zone. Both of the Brittanys got really quiet and looked at each other over my biker glasses, and then the assistant dentist tried to make a weak joke, like “Oh, you know, going to dental school is kinda like training in a war zone, ha ha!” and I said, “But I’m right, aren’t I?” and they said, “Yes, you’re right.” Okay, score one for me and my ESP. Sometimes I don’t always like to know everything, but lately the universe has been finding ways to make sure I know. None of this blissfully unaware shit.

Assistant dentist Brittany started doing the shots. As usual, my heart rate started jumping up. I felt like there wasn’t a lot of numbing going on though. So she went for another round, this time going on the inside of my teeth along the gums. The Brittanys went away for a while so the numbing could kick in, and I did a few exercises with my mouth to encourage the Novocaine to spread, like silently mouthing “Unique New York.” I could feel my right jowl going numb, buy my tongue and inner gum line were still feeling normal.

When the Brittanys came back in, they decided to start drilling. I warned them that I still had feeling, but they guessed that I was just feeling pressure or temperature. Now, kids, I know the difference between pressure and nerve pain – I’ve been through 9 lumbar punctures and they’ve hit my nerve bundles with needles every time, it’s really freaking unpleasant, and it can’t be compared to feeling a little cold. So after the third time I said “Ow!” from them hitting a nerve, they finally relented and assistant dentist Brittany did a third round of Novocaine. She told me I should feel the difference immediately. I told her that I didn’t. She sighed, went in for round #4, all along my gums on the right side and hit the juncture between my upper and lower jaw, and gave it a few more minutes to kick in. Finally it wasn’t completely numb but it was just enough numb that we could drill for about four minutes and get the rest of it taken care of.

Generally speaking, most dentists and assistants can handle two instruments apiece. Assistant Brittany was struggling with two straws and a mirror and I was nearly drowning, so I offered to do what I did before – I held one of the straws and kept my hand out of their way while they did the rest. They thought it was great.

The most difficult part was the filling. They were trying to keep the very back tooth dry while they put in a white resin filling (because I’m allergic to mercury fillings so it had to be the resin), and they were doing all kinds of things like moving my tongue and putting cotton wads in my mouth and triggering my gag reflex. They actually got me so badly that I thought twice I was going to throw up all over myself, and at one point I had grabbed their hands because I was ready to move them out of the way in case that happened. I had tears streaming down my face again. My stomach heaved. The Brittanys cooed above me, “I know, I know, it’s terrible, we’re trying not to make you gag, but it’s in the toughest part of your mouth to get to, try to think happy thoughts, wiggle your toes, oh good, you already are, just about three more minutes now, try not to throw up, we’re nearly done, you’re doing great, you’re doing really great, it’s almost time, that cotton is awful, what do you have for plans this weekend?” It was absolutely ridiculous. I checked my makeup afterwards; I expected to have trails of black eyeliner down to my chin, but I had forgotten that I had sealed it this morning in anticipation of the shit show and it had survived quite nicely. (Side note: I strongly recommend eyeliner sealant available from Meow Cosmetics – it’s the consistency of water and you put it on sparingly and must let it dry, but man, it is GREAT for keeping your makeup on longer!)

This is how I think I can help, as a patient: Have me sit upright for the first part of it so I can help position everything like wads of cotton; if I know where it’s supposed to go in my mouth, I can probably make it happen without making myself vomit and without having to fight gravity so hard. I know that they were trying to get everything done as quickly as possible, but just like I helped with the straw, I can also help with stuffing cotton in my mouth and not barfing. If I can handle my Ren & Stimpy nubs for teeth to eat with for weeks, then surely I can handle that.

Just as the Brittanys predicted, as we’re rounding up to dinner time, I’m starting to get some feeling back in my mouth.
https://www.youtube.com/watch?v=KqE14og1cQ8

I’m Bad, Like Michael Jackson

Posted on by akiwifreund

This afternoon I went to a dentist appointment that I knew would be stressful, physically. The plan was that we would be “seating” my two crowns on the bottom left. Last week one of the temps fell off and I was told by the receptionist that even though I was in pain from the exposed bone/nerve that I had to wait until my appointment today because they had no time to see me. There was also a hole in the other temp that managed to stay on but obviously did not do a lick of good for the entire 26 days of its existence.

So when I sat down, the dentist and assistant said, “So how about we also get to the catastrophic crack on the right too?” That meant that my entire bottom jaw had to be numbed. The dentist started putting the numbing gel on the back left corner, but we both knew it was just for show. He was in a hurry and soon he was bracing his body to go for the stubborn juncture between my upper and lower jaw; I saw the trace of satisfaction on his face when I moaned, the tendon in my jaw yielded and the needle felt as if it went all the way through to my ear. After doing about a dozen injections along the inner and outer borders of my gum line on the left, he attacked the right, and decided he didn’t want to slow down to make me the least bit comfortable with numbing gel. This time I had tears running out of the corners of my eyes while the assistant shouted that I was doing great. Not a few times I thought to myself that this is either the office that they send patients who are super duper tough, or they send patients who they don’t give a damn about beating up.

Still, it’s important to keep your sense of humor as a patient, or so I think to myself. This is my reasoning every time when I am preparing to be pummeled by a member of the healthcare community. I always think that if I can somehow appeal to their humanity that they will see me not as a number or as cattle, but as a human with feelings and needs.

While we sat and waited for me to lose my ability to speak, some Michael Jackson came over the sound system. Just as the dentist came back in the room, we were practicing our “hee hee”‘s.

So that was our running joke until it was time to get serious about getting the temps off and the permanent crowns on. They didn’t numb me enough. I got a few more pokes. So he set off on the right side to take down the tooth with the catastrophic crack. I had warned him that I was not optimistic because I hadn’t been able to chew on that side of my face at all; the cracked portion would shift and cause me crazy pain. He was still hopeful.

While he was working on me, sometimes he would bark orders at me – “Left! Right!” More often than not, he would use the small mirror that he had hooked in the right side of my mouth to move my head around. I could feel my wig getting matted at the back of my head – not exactly ideal, since this piece costs $370, far from cheap, and once the fibers are ruined, there’s no going back. As the minutes dragged on and the dentist maneuvered my lips and tongue so that he could get at my tooth from all the best angles, even in my numbed state I could feel the corner of my mouth splitting. Out of impatience and frustration the dentist hooked two fingers under my top right lip and stretched it as far as it would go, and kept grinding my tooth down to a nub. Tears slipped out of the corner of my eye again. My fingers tensed; I focused on relaxing them, but after a few minutes, I would realize that they were back to being claws and my forearms were becoming sore.

Finally they were done with that tooth. I can’t remember how many songs passed, but we just happened to end at another Michael Jackson song. They took a mold of the right bite so I could get my temporary crown, and finished just in time for me to say with Michael, “You know I’m bad. Sha-mone.” That cracked them up again. They asked if that was really what he said, and I asked them if they had a better explanation.

By the time they were ready to put on the permanent crowns on the left, some of the Novocaine had worn off, so I had to get more shots. More cheerleading from the assistant. I swear that my nine lumbar punctures have been easier than this trip. More stretching of my mouth, pulling my face left and right as if I am a horse being led by a bridle and bit. Barking at me to open my mouth wider when all I want to do is close it to take away the deep ache.

Finally, finally, after 2.5 hours, I escaped the chair and we talked about the next appointment, which is on Friday. I’ll have to be numbed again but it shouldn’t be as traumatic or long.

WWMJD (What Would Michael Jackson Do)? Sadly, my plan to appear more than just a mouth full of broken teeth failed. I’m not giving up my sense of humor. It’s as much for me as it is for them.

Down on the Farm

Posted on by akiwifreund

I have had so much fun being exposed to so many products as part of the Chronic Illness Bloggers network and I’ve been able to give my honest opinion, including this one for the Fay Farm Rejuvenation Lotion. Please note that I received it as a gift and the opinions that I state about this product are my own and are in no way influenced by the company.

First, I’m a good candidate for this product because boy, have I got issues. I’m hanging out in bed for about 20-22 hours every day because when I’m upright, CSF tends to pool around my brain stem, and the pressure is mighty uncomfortable. However, laying in bed for so long comes with its own problems. My fibromyalgia is singing the blues – especially now that in the state of Minnesota and while the sweet corn is growing like crazy, humidity is at its worst (check out this scientific discovery regarding how corn is actually adding to our humidity in this state here).

For about three years I also laid on my left shoulder because all of my shunt surgeries were done medially and on the right side, so my left shoulder has a pretty nasty impingement that hasn’t cleared up with 6 months of physical therapy for the third time. At this point I’m up for trying just about anything to feel better, including sacrificing a chicken and dancing around a fire.

So I’ve got pain all over, and I’ve got this crazy pain in my left shoulder. I’m always looking for ways to take away the pain. The Fay Farm Rejuvenation CBD Lotion is formulated specifically to relieve joint and muscle pain because it contains 200 mg of CBD (cannabidiol) – a product of hemp. I’m not going to get deep into the MJ/hemp debate; however, I’m going to say that I was a legal, card-carrying medical marijuana user while I was a patient in Arizona and my doctors were completely stumped about my horrible allergy to my shunt materials. I went the route of medical marijuana to try to control some of the pain and I learned about CBDs and how they are extracted from hemp plants at certain temperatures much different from THC, and also are not “psychoactive” like THC. In other words, CBDs are pain killers but they are not going to make you high.

Here’s what the lovely bottle of The Fay Farm Rejuvenation Lotion looks like (and you can tell I’ve used it):
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Here’s what it looks like straight out of the bottle, it has a slight green hue:
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Fay Farm recommends that this lotion be used for any body parts where fast absorption is desired. I agree! This is a lotion that is non-greasy and absorbs quickly; the base includes hemp oil, apricot oil, grape seed oil, apricot kernel oil, white sesame oil and jojoba oil, and you would think that with the combination of all of those oils that it would be, well, oily, but it’s not. When I apply a dime-sized squirt to my bad shoulder, it only takes about five circles before it’s absorbed.

It’s not just my shoulder that needs attention. Sometimes the tendons at the outside of my knees become tender. Don’t ask me why – I have a lot of theories but I’m sure I’ll never know the real reason. But I’ve been putting some of the Rejuvenation Lotion there too. And of course if I’ve had to do a lot of walking and standing because of physical therapy, I’ll put the lotion on my feet when I get home. Every once in a while I’ll put the lotion on the tendons that lead to the base of my skull (pretty easy for me to do since I am completely bald – no hair to contend with).

The company has described the scent as a decadent vanilla with a hint of camphor. I’m pretty sensitive to scent, and honestly, I don’t know if I would describe it that way. To me, it smells more “green” than anything and I don’t smell vanilla at all. In any case, it’s not a strong scent and should not overwhelm any of its wearers. Also, this lotion should not replace a good ol’ moisturizing lotion – keep using that chemical-free daily moisturizing lotion (trust me, look up ingredients and products on the Environmental Working Group database: Skin Deep) and get smarter about what you are putting in/on your body.

How effective is it? I would describe this lotion as being gentle and subtle. In other words, the relief I felt was not sudden and shocking; it was more like, “Oh, that part isn’t hurting right now.” It seemed like the effects lasted for about two-three hours. Because I got relief from it, I have continued to use it. It’s that simple. The chickens are safe for now.

Feel free to check out all of their products through the Canna Treehouse website.

If you are interested in this product in particular, you can visit this page directly.

The Tiers of Privilege

Posted on by akiwifreund

Minneapolis and St. Paul feel like very different cities from when I moved away 20 years ago. There was a palpable difference between Minneapolis and Albuquerque; in Minneapolis in 1995, my neighbors were white, black and Hmong (thanks to new policies welcoming large numbers of Hmong refugees from Thailand, Laos and Vietnam seeking a better and safer life), and in Albuquerque, the population was largely white, Hispanic and Native American. I felt as if I had moved to a different continent. The way that people interacted is something I can’t easily describe, except that I learned the “manana” (“tomorrow”) concept from my co-workers the hard way, and was told by employers that I would always be valued because I was a Midwesterner and therefore more “uptight and on time.” The population in Phoenix now closely resembles Albuquerque from 1995 – again, the residents are largely white, Hispanic and Native American. Because the southwest didn’t shift in any obvious way, I didn’t expect the Midwest to either.

When I moved back to the Twin Cities, I was not prepared for the greater diversity in the population, but my traveler’s heart is quite excited by it. A lot of the cab drivers I have had for my medical transportation have immigrated from Somalia, some arriving the same year I left Minnesota, telling me stories about how they excitedly called their relatives back home to tell them that powdered ice was falling from the sky (snow), and their relatives always asked the same question: “For free????” There are also now large Hispanic communities settled especially around the cities where living wages might be available. All of these groups are bringing their wonderful musicianship and dancing and food and willingness to endure countless hardships as strangers in a strange land because they know that turning back is not an option.

Why am I talking about all of this anyway? Well, the U.S. has always been a country of  tiered privilege. The caste system does not only live in India, my friends; it’s alive and well, even here in Minneapolis/St. Paul, where we pride ourselves on this appearance of being so tolerant but then have something so stupid/needless/heartbreaking/violating/sickening as the shooting of Philado Castile happen. But it’s not just race that determines where you land in the land of privilege – there’s a lot of “ands” that are the deciding factors.

Let’s start at the top. Your average white dude is the ultimate king of the food chain, born with the silver spoon in the mouth. Guys, you just are. If shitty things happen to you, the system isn’t against you in “pulling yourself up by your bootstraps.” You might want to feel sorry for yourselves, you might want to stomp and cry and try to convince us that you are being picked on and we should feel sorry for you, but I can’t. I can’t.

We can take it down a notch and look at white men who are physically handicapped by a chronic illness. Men are believed faster/more often than women when it comes to pain. Why? Medical sexism. On the tiers of privilege, white men who are in some way physically deemed “less valuable” by society are on a lower tier than ordinary white men.

I’m pretty sure my place is on the next tier down from that. I’m a white woman.

But wait: knock me down a few more rungs, because I’m a white woman who is also physically disabled. Since I’m a woman and I’m physically disabled, I have absolutely no value whatsoever, a “non-person,” specifically. My cane and paralyzed face make me invisible to nearly everyone (and if you don’t believe me, you should walk through a store or down a sidewalk with oncoming foot traffic with me).

But yet…where do all of our friends and neighbors of color fit in?

My Filipino ex-boyfriend was educated and articulate (except when it came to actually being in a relationship – but that’s another story); his status as a man was relatively high, but as a man of color he ranked lower. Unfortunately he suffered from bipolar disorder, so that could be seen as a detriment, but then again, he was believed – his gender saved him from medical sexism. He always claimed that strangers looked at us distastefully when we were out in public. I think he is valued much more than I am, even though he would deny it.

My most recent Native American boyfriend had a much harder upbringing. He grew up on the largest reservation in the U.S., the Navajo reservation on the New Mexico side. Poverty, crime and mental illness brought him into adulthood. He left the rez to get an education, but for one reason or another, he has clung to the the things that have only brought pain and destruction to his life. Where does he fit into this world?

And then there are the women of color who earn even less than the men, who are physically and sexually assaulted, are obviously valued less when they are forced to remain silent in the company of men or to walk a few steps behind them. Add an “and” to them – a physical disability – and really, how much lower can one go in terms of value as far as society is concerned? I startled a Somalian woman in a waiting area once; I carry cough drops and I noticed she was having a coughing fit, so I offered her one. Her interpreter arrived a few minutes after that and she was called back for her appointment, but she made it a point to tell her interpreter to thank me in English. I did not consider it an insult that she did not know how to say it herself when she was on her own, but since I know how the public at large acts more often than not, I could just imagine that even that simple interaction added stress to her afternoon. Like me, she walked with a cane. I wondered how she was treated by her peers and family.

I am always disappointed when I see/hear someone say, “Why don’t they just ____”? as if we are simple creatures and there’s a one-size-fits-all answer. There isn’t. (That’s why they should stop just conducting medical studies on middle-aged white men if they want real-world results. I mean, hey, we finally figured out that heart attacks are worlds apart between men and women!) The most important thing to understand is that just because things look a certain way from where you’re sitting doesn’t mean that everyone else feels the same way. If you can’t see past yourself, then your world is very small indeed.

Amateur Hour: How Vanderbilt/NIH Undiagnosed Diseases Network Failed Me

Posted on by akiwifreund

Earlier this year, I worked for four hours sorting and copying approximately 350 pages of medical records to send to Vanderbilt University in Tennessee when the coordinator for the NIH Undiagnosed Diseases Network notified me that my case was being sent there for review. I divided everything by year and specialty. I inserted notes and highlighted everything that should be of special interest.

I took it as a bad sign when I received an email that was poorly written, and rightly so:
“I need you help with some missing records the UDN has requested on you. We are missing the records from the Movement Disorder Neurologist and  also labs associated with Thyroiditis Workup are not complete. Please request these records be faxed directly to us at *********** or **********. We cannot move forward with reviewing your case until we have these records. Please feel free to contact us if you have any questions.” They weren’t actually missing the records from the movement disorders neurologist; the EMG results were included in what I forwarded to them. (Special note: capitalizing random words is an elementary mistake in and of itself and certainly doesn’t belong in official correspondence.) I wrote back and asked what needed to be obtained for the thyroid workup because I was going in for an appointment in the near future and could have tests ordered. However, I didn’t hear a response for weeks. Their suggestion to contact them with questions was not sincere because they didn’t respond to repeated calls or emails for three weeks total. I went to my appointment and guessed what they would want ordered, then forwarded them the results.

It didn’t matter, though. Last Thursday July 14th I received a letter in the mail from the head of the team saying that after a “stringent” review of my case, they were turning me down. They decided that because I have a strong history of autoimmune diseases that I must consider myasthenia gravis.

Here’s the problem, though: I considered myasthenia gravis already back in 2010, and again this year, and it has been ruled out by tests including the painful tasing of my face in April. All of those notes and tests were included in my paperwork. The 53 doctors who have seen me so far have positively said that I don’t have that. I also say I don’t have that. I have not found any documented cases where patients have received a working brain shunt to move CSF to relieve the symptoms of MG. I have hundreds of pages documenting my numerous symptoms and surgeries, and instead the Vanderbilt team chose to tell me to go back to the U of MN doctors (who, by the way, told me to go away and not come back) to get treatment for MG because “they would know how to treat me.” I am not allowed to appeal this decision or have any other team look at my file. The UDN door is forever closed to me now.

The next two paragraphs I’d like to address to that team directly:

Fuck you, Vanderbilt, you backwoods amateur cocksuckers.

This is what I don’t have: myasthenia gravis, lupus, MS, normal pressure hydrocephalus, communicating hydrocephalus, Creutzfeld-Jakob, IgG4 proliferation, scleroderma, pseudotumor cerebri, diabetes, secondary tremors, tumor, chiari malformation, or rheumatoid arthritis, among other things. After seeing so many doctors and going through hell and having to research A LOT on my own, Vanderbilt, your suggestion makes me think that my file landed in the hands of a beginner’s group. I’m way ahead of you, by years, and I didn’t even finish my medical degree. Every single one of you needs to go back to studying onion skin cells under your 10x microscopes because you obviously can’t handle the hard stuff.

As I feared, Vanderbilt chose to give much weight to the three doctors in the circle jerk at the U of MN claiming I had some sort of “facial weakness” that would imply MG and completely ignores the issue with the cerebral spinal fluid, which in turn ignores the vertigo, fatigue, slurred speech, numbness, and cognitive problems. It would also imply that I implanted a shunt for the fun of it – because I want something that I’m allergic to that causes a shit ton of pain in my body. It also means that they completely ignored the notes that indicated that my symptoms subsided when I had working shunts. Now I am back to the starting point, meaning no one knows what I have or how to help me. (Please note: I am still going through testing for the mast cell activation syndrome and I am watching the results slowly trickle in; my guess is that I’m going to have to repeat everything because nothing is extraordinary in the outcomes at this point.)

I also still don’t have disability money coming in. My hearing won’t be set until about a year from now, but my chances are only about 10% in my favor at the moment because I still can’t get a diagnosis or the NIH to work with me. I’m not being dramatic, I’m being realistic. My attorney would tell everyone the same thing.

If you have read this post in its entirety, thank you. I’m not asking for advice; that’s not how I operate. This is just one of those times where the Carousel of Crap feels extra shitty.

My Aching Back/Arm/Knee/Foot/You Name It

Posted on by akiwifreund

What are the two most common symptoms of chronic illnesses that we hear over and over, without fail? Fatigue and pain. This post is all about pain. That is why I was excited to receive this product to review, because in all of my adult years (24+ now), pain has been my constant companion. Just to be clear, I have been given this product through the Chronic Illness Bloggers Network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company Mo-Haganys’ Dream Cream Products.

One friend, Nikki over at As I Live & Breathe (https://ilivebreathe.com/about-me/), got her products before I did, and excitedly told me, “Chels, just wait! Just wait! I did not have to take my painkillers tonight!” Now that is a huge endorsement, because like me, Nikki has some major stuff going down in her body that is the stuff of horror films (I will let her tell it).

What is this stuff anyway? Well, it’s some crazy concoction that seems so simple that it should be obvious and available everywhere and after you read this, you should be wanting to bathe in it. Unfortunately, your cynical side might still win out and you will proceed with caution. You will wait a few more weeks to buy a bottle with a homemade label because, hey, what does this woman know that big pharmaceutical companies don’t? But if you’re smart, you’ll give this serious consideration, because I’ve been a doubter myself many times too, and I treat Consumer Reports as a shopper’s bible, and when you find gems, you buy them up like they’re going out of style.

The woman who owns this company, Keri, formulated these products after contracting bacterial meningitis and developing debilitating pain and being placed on, in her words, “ridiculous” pain meds with horrible side effects (something that I myself know well). She began researching apothecary and Chinese herbology, and discovered a way to ferment cayenne pepper to make a capsaicin paste that does not “burn” the skin. She then worked on using different ingredients for blending and aromatherapy to compliment the paste’s action to “deaden” or “muffle” the nerve action. It depends on the person and the severity, but the pain relief can last 6-12 hours.

I was looking forward to this particular product challenge because my body is really giving me hell right now. Besides the ever-present abdominal pain from the rejection of the shunt materials, I am pretty sure the tendons at my left shoulder are frayed. I’ve been in physical therapy for three months and though my strength has improved, the pain has actually become worse; my doctor has ordered six more weeks of PT and an MRI at the end, but is reluctant to perform surgery because of my proclivity to immediately build up copious scar tissue and possibly undo everything the surgeon would do for benefit. This month was also the Hydrocephalus Association conference and so I was in incredible pain from sitting, walking and standing for four days, my feet and hips taking the brunt of the beating.
2016-06-28 16.09.06

Immediately after receiving this package, I tore it open and slathered the lotion, Mo’s Dream Cream, on my shoulder. I could not wait. The lotion has a thin consistency and I would caution everyone to use common sense like they would around light-colored fabrics and tomato food products: make sure it is well-absorbed before contact is made, or there might be color transfer that is irreversible. Also, another caution mentioned more than a few times: do not apply to broken skin. Here’s a small sample so you can see for yourself:2016-06-28 16.09.32.jpg
These products have a very specific scent, though I struggle a bit to describe it. You will recognize the spiciness of the capsaicin, because it’s the stuff that flavors our Mexican/Thai/Vietnamese/Korean food and haunts us later. But the essential oils include orange, tangerine, clove and wintergreen, so you will have hints of hot chocolate and sledding parties wrapped up in your burrito dreams.

The left shoulder pain is preventing me from sleeping comfortably. I also cannot get dressed easily, pick up items at waist level, overhead or floor level, or reach over to rub my boyfriend’s shoulder in a display of affection. Even doing simple things like buckling my seat belt as a passenger are turning into ordeals, and I have cracked three teeth on my left side because of the pain. So for me, because there’s structural damage, it’s not an easy fix; the pain can spike up to a good old fashioned 10. However, the lotion can bring it down to about a 5 in a matter of minutes, and keep it there for about 4-5 hours.

My abdominal pain is a little trickier. I’m allergic to the parts of the shunt that are housed in my abdomen and the pain is at exactly the place between the front of my abdomen and the middle of my back, so it’s in the middle of my middle. Again, the pain can spike up to a 10, and applying the lotion can get it to calm down to about a 7, but it’s just in a tough spot. Until I can figure out how to get a dose to middle earth, I am not convinced it’s going to get better than that.

After the first day of the conference, the pinched nerves in my hips were severely limiting my gait. My feet felt as if I had walked over hot coals. I could barely move, and I nearly cried at the thought of having to get up and do it all over again for three more days in a row, early to boot. I decided to wash my feet and then try to the stick form of the pain relief:
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Even though the capsaicin paste is the same, the scent and emollients are slightly different. 2016-06-28 16.53.09 The next morning, when I had to go back for day two of the conference, I felt as if day one had been erased by the pain stick. That is HUGE.

Overall, I felt like the lotion did a quick job of penetrating to the pain and providing the relief, but I certainly appreciated the convenience of the “No Mo Pain Stick” too – so much easier to carry that in a purse than the bottle of lotion, which now has a permanent spot on my nightstand.

Now I’m mentally debating making an appointment to see my pain doctor just to push these goodies on him. He’s a younger guy and I know he has chronic back pain. I want him to try it. I mean, what could he lose? He could just put some on a spot on his back and then slap a pad over the top of it if he’s trying to maintain a scent-free office because of sensitivities…

The skeptic in me also wanted to make sure I wasn’t under undue influence of the placebo effect, so I sent this with my sister for a few days, because she has RA. She was afraid that her boys would be put off by the scent but her co-worker dug into it, and she felt as if it helped her with pain (though I didn’t get to discuss it at length before I grabbed it back because my shoulder was singing like the hounds of Hell).

Here is a snapshot of the information that Keri sent with her products that you may find useful:

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Since I can’t transport a bottle directly through my screen to you, you still have to go and get a bottle the old-fashioned way through the internet, but I’m thinking you won’t be disappointed. And hey – Keri is even offering everyone a discount who has enjoyed my review by using the code CHELSEA4U (which I was not expecting, but thought extra helpful if you are on a budget): https://squareup.com/store/modreamcream.

Can You Describe It To Me?

Posted on by akiwifreund

This week I’m getting ready to attend the 14th National Conference on Hydrocephalus (http://www.hydrocephalusconference.org/conference-information/conference-fees/) that is happening right here in Minneapolis. I’ve got my t-shirts ready. I’ve got my binder of medical history ready. I’ve got my boyfriend ready. I’ve got my transportation ready. I’ve got the hashtag for Twitter ready (#HACON2016). I’m getting mentally prepared to be upright for 9 or 10 hours for three days in a row (only about three hours for the fourth day because everyone is flying home Sunday). It’s going to be really, really tough, physically and emotionally. I just don’t know what to expect but I’m trying to prepare for every variable.

I’m starting the conference by meeting my attorney for the first time because he’s about five blocks away. He doesn’t know that if I detect laziness from him, or a “can’t do” attitude, I will kick him to the curb. At this point, I cannot be the only person fighting for me. I don’t know if actually seeing me and my physical challenges will change his attitude, but he has not been impressive over the phone so far. I keep getting flashes of Boss Hogg a la “Dukes of Hazzard,” all oily, fat fingers and labored breathing. (I realize I’m being very harsh and am one step closer to Hell. Maybe I’ll see you there?)

Then I’ve got to figure out how to be succinct. My t-shirts do half the battle for me. The weather we are having is both a blessing and a curse for me, because if anyone sees me outside, they will witness me at my worst – my face will be almost completely paralyzed, so that means my eyelids will be mostly closed. However, air conditioning helps with temperature, pressure and humidity, so it will take longer for the pressure to build when I’m inside. When it’s bad, I want to die. It’s not an exaggeration. I have trouble explaining it. It’s not a headache. I associate headaches with dull or shooting or throbbing pain; this is more like my brain is being suffocated and crushed by an elephant sitting on it while my head is submerged underwater. But how can I explain that without it sounding like an outrageous exaggeration? It’s not like I keep elephants in my back pockets to demonstrate to others on the spot what is happening with my body for times like these.

I’m also dealing with my left shoulder and right hip giving me loads of trouble. I babysat my nephews Sunday night while my sister and her husband attended a concert, and I had to block a body shot from my 7-year-old nephew, which made me nearly weep with the pain it stirred up in my shoulder. It hasn’t stopped since. I knew my physical therapist would ask for a number to rate it today. I struggle with the pain scale, because as I pointed out to a fellow blogger, my “7” is someone else’s “21.” My PCP thought I was dealing with an inflamed tendon, but since therapy has not been a steady upward improvement, I may in fact be dealing with tears in the tendons and/or ligaments in my shoulder for laying on it for the first three years of shunt surgeries being done on the center and right side of my body. I’ve got an appointment with an orthopedic doc who only specializes in shoulders a week from today.

But even my crying “10” isn’t my real “10.” I would say that my worst pain has been when the CSF has been overdraining – both after my very first surgery, and then for almost all of 2014 when I had a leak in my shunt but my doctor wouldn’t operate because he wanted to find out which parts I was allergic to. Almost every time I got up, I cried. It really did feel like I was being beaten. I know it’s because my brain was coming to rest on my cranial bones. What would be worse? Read my fellow blogger’s description of her “10.” http://www.thehurtblogger.com/post/15492551756/evaluating-the-1-10-pain-scale
Now if you’ll excuse me, I’ve got to try to track down a reduced-rate or free dental clinic that will do three crowns for me. I can’t chew on the left side of my face because I’ve been in so much pain that I’ve been clamping down with my jaw in my sleep and I cracked three teeth on my left side.

FOOD FOR THOUGHT:When Good Intentions Aren’t Enough: Loving Each Other Better

Posted on by akiwifreund

FROM: AS I LIVE & BREATHE – Nikki Seefeldt, co-host of Sickadilly Chat

I’ve shared some of Megan Devine’s work before here in my blog in the past & I absolutely love her approach to dealing with pain & grief in life. I follow her on Twitter & w…

Source: FOOD FOR THOUGHT:When Good Intentions Aren’t Enough: Loving Each Other Better

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.

Sleep and Counting Sheep

Posted on by akiwifreund

What are the two most common symptoms of just about any chronic disease under the sun? Pain and fatigue. Sometimes pain interferes with my sleep, leading to even more fatigue. It’s a never-ending cycle. I jumped on the opportunity to try this product from ProHealth called FibroSleep, because let’s face it – even the best bubble baths, candles, teas and essential oils can’t fix everything every time. Specifically, I was given this product as part of a product review opportunity through the Chronic Illness Network. This item was a gift and I have been encouraged to give an honest opinion and review without any influence by the company. If you have read anything else I’ve written, you know I don’t hold back.

One of the problems that I run into with my additional strange, undiagnosed rare disease is that because of the increased pressure in my cranium, I get anxiety. Sometimes it feels like it comes out of nowhere. Sometimes I can blame it on specific events – like doctors who tell me that I am imagining my symptoms, or that my cluster of symptoms are actually unrelated to each other (even though the majority occur in my brain), or that there’s nothing that can be done and to never come back, etc. About every ten days I will have an entire night pass where my anxiety simply rules my entire body and I cannot fall asleep.

I received this product just in time for a particularly bad run of insomnia thanks to some discouraging appointments:
2016-05-05 08.02.56
I always, always check labels to see what’s going to be invading my body, so here’s the ingredients:
2016-05-05 08.02.42
This particular beef has come up for me before with me and labeling, but I would like to point out that if you have a camera on your phone that has a high pixel setting and can adequately blow up a picture so that you can read tiny writing, you may not see this as a problem. However, if you don’t, and you don’t carry a magnifying glass, you will not be able to read this label and figure out the ingredients. I’ve been told before that it’s a space issue – they simply don’t have enough – but here’s some blank space that’s not being used:
2016-05-05 08.02.20
The size of the capsules are pretty standard:
2016-05-05 08.07.05

I tried the capsules for three nights in a row and nearly gave up completely. I have had previous experience with 5-HTP and melatonin (both included in this product) and figured that it would be a slam-dunk, but anxiety that was prompted by doctors with big egos and closed minds completely overruled any compounds I was consuming, so I got zero sleep. I didn’t even get a weird, loopy feeling that I sometimes get with those two ingredients the morning after.

Which brings me to an important point: with both 5-HTP and melatonin, you will give yourself the best chance at getting good sleep if you cut out ALL light because light messes with your REM patterns. Look around your sleeping area and address all sources of light, including your phone, your laptop/tablet, your router/modem and your TV. Okay, so I just named off everything in my sleeping area – because it’s my bedroom and also my living room since I have a studio apartment. Even my sun therapy lamp has a bright red light that glows when I turn off my room light at night that would otherwise mess with my sleep if I didn’t somehow cover it up (I used black electrical tape).

I put FibroSleep in a drawer for a week and a half and resigned myself to terrible nights (and days) while I struggled with the politics of navigating the good ol’ boys’ club of male doctors. When I felt like I had put enough space between them and me, I tried again. Boy, did I sleep – like a rock. I did have some funky dreams because apparently my brain had a lot to work out. Also, each night I took the FibroSleep I dreamed that I was physically going through the motions of going to the bathroom, which I have learned over the years that that is my own personal signal to wake up pronto because my bladder is full and no joke, IT’S TIME TO GO. It conked me out so fast that I forgot to use the facilities before falling asleep. Most of the times I woke up to use the bathroom I also could not fall back asleep, so I only clocked about 4-5 hours of sleep total. On those nights I was loopy. This is definitely not the fault of FibroSleep. I have always had a hard time falling asleep after waking up to do things like running to the bathroom, so I broke the cardinal rule of not interrupting the sleep so that I could reap the benefits fully. I have always envied those people who can easily go right back to where they left off.

I have had fibromyalgia for about 18 years, and sleep is always a big challenge. Even if you don’t have fibromyalgia but you are like about 70% of the adult population at any given time and you are going through an especially extended and rough patch of chronic insomnia, FibroSleep may be worth checking out. Currently (May 2016) they are offering a 20% discount on FibroSleep orders here: https://www.prohealth.com/shop/product.cfm?product__code=PH311FB&B1=BLGGPH311

Also, if you are interested, they are giving you the opportunity to enter in a chance to win on their giveaway: http://fibrosleep-giveaway-bloggers.instapage.com/

Lastly, ProHealth offers a number of products. They actually have done something quite handy with their site and divided it up by conditions and topics, so you can read articles and shop for products specific to your condition: http://www.ProHealth.com