A good friend whom I have known for ten years now, whose portrait is one of only a few that actually hangs in my flat, asks every time we are on the phone if I am “better.” I pause every time because I don’t know why she keeps asking me. Her dad has diabetes, yet she never asks him after he goes to bed one night and wakes up the next morning if he is “better” and “cured.” She’s flying into my city next week to walk in her graduation ceremony for her doctorate degree and I will have to insist, once and for all, that she stop asking me that insane question and really see for herself. Sorry, not sorry. Read the following from my fellow blogger.
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Author: akiwifreund
Down on the Farm
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):
Here’s what it looks like straight out of the bottle, it has a slight green hue:
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.
Dear Mr. President
I figure I have nothing to lose.
It will be a few months until all of my dental work is completed. I am pretty sure that the one tooth that has a “catastrophic” crack is going to be a complete loss, and I’m going to have to spring for an implant (or a partial plate/denture). I’m not allowed to have pain pills – not because I’m not suffering, because clearly I am, but because the FDA and the CDC has decided it’s a good idea to regulate me, rather than try to treat addicts. So I’m stuck eating scrambled eggs and applesauce and rice because I’ve cracked all of my teeth because I’m in pain.
The NIH/Vanderbilt has turned me away with a final diagnosis that is a complete misdiagnosis, so now I’m down to a PCP who will only write me prescriptions for my cholesterol meds. I might have the mast cell disease doctor, I might not. That’s up for debate.
So I wrote a letter to the President.
That’s right. Not that I expect Barry, a single digit midget with only months left in office, to be able to do much about it, but overall, I think those of us who are applying for or who have received disability really get the short end of the stick every time. Here’s what I asked for:
1) Common sense from the people who determine disability. I cannot believe how many times I have heard directly from people who say they have been turned down for disability because they have been paralyzed. One person was a paraplegic and their only way to ambulate was to blow into a straw on their customized wheelchair. THAT PERSON WAS TURNED DOWN FOR DISABILITY. Unless the SSA can prove that the vast majority of the U.S. population ambulates by blowing into a straw on their customized wheelchairs, I think this person should be considered disabled. Likewise, if I have to lay for 20-22 hours a day to keep the pressure off of my brain, common sense should tell my determiner that I am disabled, unless the majority of the U.S. population travels to work on a bed. THEY DON’T. Yet here I am, being told that there’s no way anything is wrong with me. By the way, it’s not just my physical limitations that determine my disability (silly me for thinking that); it’s my age and education too, and since I’m college-educated, there’s a higher chance of me finding some job to support myself – more so than someone with just a high school education, even if it’s a physical labor job that requires only a high school diploma. One guy was told that he can fold napkins, so he was denied disability. If anyone knows of a job where the only duty is to fold napkins and you can pay all your bills and eat too, hey, let me know, I will fold the shit out of those napkins…from my bed.
2. The time to process a disability case is appalling. I was told it “wasn’t unreasonable” to have to wait two years to be assigned a hearing to determine disability. If I can’t work and I don’t have any source of money coming in to pay for basic needs like rent and groceries, how is this reasonable? Not everyone has relatives that they can live with.
3. Accountability. I told President Obama that it’s incredible to me that I have to resort to writing to him or to daytime talk shows or to local TV stations with the hope that someone will find my story interesting enough to want to “rescue” me. But what about the thousands of people like me who don’t get that chance? Why should only one person win the lottery? Why are only some people worth the money and effort?
In closing, I acknowledged that my letter could be completely pointless if Trump is the President Elect. We all know how he hates disabled people…and people of color…and women…and poor people…and foreign people except for his wives (that he later cheated on)…
The Tiers of Privilege
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
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.
The Princess and the Pee
There were three things rolling around in my “Personal Belongings” plastic drawstring bag – one “hat” that is used to measure output, and two tall brown jugs with screw-on lids and my name on them. It was time to collect my pee.
The jugs were about 4.5 inches wide and 4.5 inches deep but a whopping 12 inches tall, which meant that in order to fit in my half sized refrigerator, a shelf had to come out. I made sure that I set everything up on an empty bladder so I didn’t have to scramble to do it later. I rearranged my fridge and put the jugs on the top shelf so that they would already be cold, ready for the first deposit. I very loosely screwed the caps on. I got the box of green latex gloves out of my medical supplies and sat them next to the toilet; I was not going to be transporting the collected goodies with my bare hands. I put the “hat” under the seat.
Luckily The Saint Paul had a good sense of humor about the whole situation too. He was on cooler duty for me; I sent him a picture of the one I thought would fit the jugs and he picked it up on the way to my apartment after work. However, when we tried to fit the jugs, they were just about 3/4″ too big, so I had to send him back out for a bigger cooler (that I could still carry by myself while also using a cane). I thought I would only have room in my freezer for a 5-pound bag of ice and so that is what he came back with for me.
Bright and early the next morning I started drinking water.
As luck would have it, I had plans to see someone that evening whom I hadn’t seen in at least 13 years who just happened to be in the city because of a work obligation. When you get an opportunity, you do everything you can to take advantage of it! This friend was going to be only blocks from my now deceased dad’s and uncle’s hair salon (still owned by their good friend), so I thought, “Hell, I’m going to get some wigs cut too.” I managed to get a short bus for 3:45 pm to take me to the salon, and to pick me up and take me home at 10 pm, so that meant that I could only pee from 7 am to 3:40 pm, and about 10:30 pm to 6:45 the next morning. It’s a good thing I’m a planner. It’s also a good thing I have the bladder of steel. I told my friend I’d see her at a certain time and that I couldn’t pee while we were out (without offering an explanation).
I did pretty well. I took in about 80 ounces of water between 7 am and 2 pm, and managed to get a bunch of samples before my bus rolled up at 3:45. However, I did hit a few snags. First, the “hat” didn’t sit well under the seat – I almost completely lost the biggest collection and I had to jump up midstream and pull half of the container up from out of the toilet. It wasn’t dunked in the toilet water but I did manage to get both hands wet, and was so grossed out that I had to do a surgeon’s scrub before I could finish peeing, but I had to do it really quickly because I hadn’t been able to wipe my booty so I had to kind of stand bow-legged and squat like a cowgirl who had been riding the trail for days so my legs didn’t also get drenched (thank goodness for the bidet). Second, the “hat” didn’t have a very big pour spout, so when I went to the fridge to transfer my drop to the jug, I had to pour very, very slowly. I had a lot of time to contemplate my urine. I remember thinking, “Man, that smells really fruity. Why does it smell really fruity? I’m not even borderline diabetic.”
Another thought: “There are some FetLife men who would mourn the loss of this tasty liquid.” Another thought: “Replace ‘tasty’ with ‘nasty.'”
I managed to not use the bathroom once between 3:45 pm and 10:30 pm, so no samples were sacrificed in the name of reconnecting with old friends. Everything went into those jugs.
I only ended up filling up one of the jugs with my samples, and my special instructions were to bring the sample packed in a bag of ice packed in a container of ice to the hospital. However, since this cooler was much, much bigger than the one that was only slightly too small, I had to improvise when I realized the ice only reached the bottom 2 inches of the cooler when it spread out. I knew I only had minutes before the cab showed up to transport me to the hospital, so I started grabbing the nearest things – throw pillows from my couch to fill the large spaces. I stuffed those around the pee jug in a bag, then poured the ice in. There was still space not covered in ice. What to do? I had an old bag of nearly petrified cut rhubarb in the freezer that I thought was going to be used for custard bars (seriously, make these rhubarb custard bars), so that was thrown on top. Perfect.
I got to the M Health building at the U of MN hobbling with my cane in my right hand and this cooler big enough to fit a small man on my left (bad) shoulder and slowly made my way to the lab. When I got to the front desk, I notified the clerk that I had a temperature-sensitive sample, so she asked me to follow her to the back area with the phlebotomists so they could accept it and log it. The woman who ultimately took it was flustered and momentarily angry when she saw my throw pillows – she assumed that I had forgotten the ice part. I grabbed the rhubarb off of the top and threw it in the trash and she took the cooler to the back to pass it along to the technicians.
While I was waiting for my cooler to reappear, the clerk and I realized that another cooler that was sitting there was leaking water all over the floor. She opened it and it contained another pee jug. I was surprised to see it laying sideways completely submerged in water – I guess they had complete confidence that the screw top was a tight seal and there would be no transference either in or out? Either way, the clerk and I started working on mopping the floor up with paper towels. Of course, I did another surgeon’s scrub at the sink immediately afterward. If I’m not okay with getting my pee all over my hands, I’m not crazy about Stranger Danger’s either.
There is a distinct possibility that I will have to repeat this test a few more times. If so, I will be more prepared – more ice, less rhubarb!
You Know, Like The Nasal Spray
Tonight was supposed to be a date night with the boyfriend. Unfortunately, I’ve been nursing a headache all day that has been getting progressively worse, so we’re postponing until tomorrow night and I have vowed to not make myself ready for public consumption tonight even a tiny bit. Instead I’m listening to Enigma and thinking about how to put all of this week’s news together.
When I was little, I had a lot of problems with asthma and allergies. There was one time I had gone hog wild with the Cracker Jack tattoos and then went into anaphylactic shock shortly after from who knows what and was rushed to some kind of urgent care (though back in the 1970’s it wasn’t called that), and my mom and I remember that the doctors and nurses were momentarily amused to discover how enthusiastically I had stamped them onto my arms and legs when they hurriedly stripped me down to shoot me up with multiple adrenaline shots. I always had allergic reactions that seemed to come out of nowhere. I would have hives show up on my little cheeks that couldn’t be explained. We tried so many things, including eliminating dryer sheets and perfumed laundry soap. I could only bathe with certain soaps – I remember being disappointed that my friends had fun soaps with glitter, while mine tended to have real oatmeal and vaguely resembled excrement.
Often my allergies would turn into full-blown infections. My little body was so worn out from the allergic reactions that the microbes had an easy time of taking over, every time. I know now that specifically I am even more vulnerable because I have both IgG3 and IgG4 immunodeficiencies, so I cannot fight off infections like other people can, and my infections will always last longer.
One of the many things I always struggled with is cigarette smoke. I knew from a very young age that I was allergic to it; it wasn’t just that I didn’t care for the smell, but that it made my throat close up, like I was having an allergic reaction to it, much like what people experience when they are very allergic to cats (a more common allergy than dogs), or when they have a peanut or egg allergy. After being exposed for a few hours to cigarette smoke, it’s inevitable that I will develop an infection. Three of my four parents were smokers and so I always had sinus infections, bronchitis, ear infections and pneumonia growing up. Nowadays I’m thankful that most places in the U.S. have adopted laws banning smoking in indoor public places.
Animals are tough too. We had a cat that I loved very much but we ended up having to re-home her with our aunt after it was confirmed just how allergic I was to her; our dogs were outside dogs at my mom and step-dad’s house, but my dad and step-mom had an indoor dog. It seemed like I always had a sinus infection and/or bronchitis and/or an ear infection.
There are other allergies that I have noticed over the years that are not the usual suspects for most people. For instance, I get hives all along the entire surface of my body that has been in contact with brand new furniture. I’m not sure if it is the dye in the fabric or the chemicals in the padding that I’m allergic to, but it’s miserable. Also, commercial perfumes that the general public wears and Lysol are incredibly toxic to me. (When I used to work in the cubicle farm at Bank of America in Phoenix, I used to stand up and yell “Stop spraying!” if a co-worker started spraying Lysol in his or her cube because my throat would immediately start closing up. Everyone thought I was nuts.)
Lately I’ve been having some trouble with my pulse being about twice the normal rate and with my blood pressure being elevated. I also have burning and a metallic taste in my mouth, constant heartburn that no one to date has been able to pinpoint the source of, and of course the constant problems with my CSF, memory, word recall and crushing fatigue.
Back in October of 2015 at the urging of a friend, I made an appointment with Dr. Lawrence Afrin, who is fairly new to the University of Minnesota staff; he used to live in South Carolina and transitioned to Minnesota starting in 2013. When I moved here a year ago, I was trudging back and forth between appointments with doctors and labs and scans, and didn’t think much about what he had to offer me, quite honestly – I mean, I thought that what I had going on was better addressed in the areas I had already been concentrating on: neurosurgery, neurology, immunology, rheumatology. I couldn’t even find a regular primary care doctor who could handle me. I made the appointment anyway, but Dr. Afrin is in high demand, and they booked me for ten months later. I didn’t give him a second thought.
A month ago I received a call from his office with the offer to move my appointment to the end of June. I accepted. In the meantime, the same friend who urged me to make the appointment also bought me his book and sent it to me, so I quickly started reading it because of the pending appointment – “Never Bet Against Occam.” Within the first 20 pages I realized that I was reading about my own puzzling history. I started to assemble my list of questions and completed my 3-ring binder for the appointment.
Dr. Afrin is considered the national expert on a newly identified disease called Mast Cell Activation Disease (or Syndrome) or MCAD (or MCAS). It has only begun to be identified in the past 8 years, and he has been at the forefront of the movement to get it nailed down and classified. Everyone has mast cells. Everyone with this condition has a “normal” amount of cells, but they act in a very abnormal way. For some people, maybe it’s normal for them to have an allergic reaction to a mosquito bite. However, if they go into anaphylactic shock from the mosquito bite, then that might be considered MCAD if the actual number of mast cells didn’t increase.
Dr. Afrin first read through my records. Occasionally he quietly chuckled to himself as he read. At one point I asked him what was funny; he said that the signs I had MCAD were quite obvious. I told him to wait until he got to the part where I demanded to get azathioprine to try to stop rejecting the shunt, because I came up with that on my own, no one suggested it to me (I found out from his book that he prescribes chemo drugs such as azathioprine to MCAD patients in an attempt to try to find the right treatment).
In another section, he stopped and said, “Oh, Dr. T. here said that you have a mast cell disorder.” I said, “He read that I was coming to see you in the future. Let’s just ignore everything he said because he misdiagnosed me, shall we?” He laughed, but then later said I shouldn’t be so hard on my doctors in general because their main goal is quantity, not quality. I didn’t tell Dr. Afrin that he was my 53rd doctor at that point. I also didn’t want to go into an impassioned speech about how difficult it has been to lose my ability to work, to lose my house and car, my independence, and my sense of self-worth, all because doctors thought my case was too difficult and they just wanted easy cases.
Dr. Afrin thanked me for putting together such a complete medical history of the last six years. We talked about my life from birth to present and what were probably the signs of MCAD from the very beginning.
Here’s the plan: He’s going to request the biopsy samples from my upper GI (that I insisted on getting done on my own because I’ve been trying to figure out where this horrible acid reflux is coming from) so that they can be stained with the special stains that can show the concentrations of the mast cells. I’m going to have a bunch of blood work done next week. I’m also going to be sent home with a collection container that is going to live in my fridge for 24 hours. Can you guess what it’s for? Not Kool-Aid! Urine that I have to collect for 24 hours worth of peeing. That’s right. Then I have to transport that back to the lab, but first I have to pack it in a zip lock bag, pack it in ice, and then put it in a cooler. The urine has to stay cold or the components that have to be tested begin to degrade and become useless.
My sister and I had some good laughs over the whole refrigerated urine thing. First of all, I’m a bit of a germaphobe – partly because of the time I spent in nursing school and specifically in microbiology and all of that in-depth studying of bacteria, and partly because I know my immune system is weak. Second, I’m going to have to carry the cooler in my left hand because I have to walk with my cane in my right hand. Right now my left shoulder is in really bad shape because the tendons are likely frayed. What if I drop the cooler of urine? Am I destined for YouTube infamy when the bucket-o-urine splashes me in the face?
I’m thankful for this person steering me to Dr. Afrin. I’m trying not to get too excited because even though he’s 99% certain that I have MCAD, I’ve been down the 99% certain road before a few times, and it’s very emotionally draining to get misdiagnosed.
My Aching Back/Arm/Knee/Foot/You Name It
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.
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:
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:
Even though the capsaicin paste is the same, the scent and emollients are slightly different. 
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:
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.
Happy Anniversary
Exactly one year ago today I got on a plane and moved from Phoenix to St. Paul. According to the dust on my shelves, that’s the last time I dusted as well.
The first six months were difficult. I was going from doctor to doctor, trying to find any that wouldn’t turn me away. I couldn’t drive because I lose about 80% of my vision while I’m upright for a long time, so I spent about $500 a month just on cab fare alone; when I wasn’t going to doctor appointments, I simply stayed in my apartment.
It took me a lot to where I am right now: I have at least a primary care doctor, I have had 3 months of physical therapy for the pinched nerves in my shoulder and hips, I have a disability attorney (but probably no hearing until July or later 2017), and I now use the short bus and a cab company that is contracted through medical assistance to get me to appointments. I also have an incredibly supportive boyfriend.
There are still some black holes of missing pieces. One: I still don’t have a diagnosis. Two: I don’t know what in the hell I’m going to do about my shunt.
June 16-19 was the National Hydrocephalus Association conference, and I never would have been able to attend if it wasn’t right here in my back yard. I had decided that I was not going to be shy. I had also decided that although it was nice to meet other patients and commiserate, I really, really wanted to pick the brains of the researchers and doctors and manufacturers of the shunts.
At the very first speaking presentation, a researcher spoke about the work she has been performing regarding shunt occlusions (blockages). I raised my hand and first asked if the study began when the shunt was still in the patient (so they could figure out if the drainage tip was stuck somewhere, like a drinking straw that’s clogged by a large piece of fruit or an extra thick shake) or if the shunts were studied after they were removed, because I tend to immediately make 20 years worth of scar tissue in 2-3 weeks and clog my shunts very quickly. She indicated that she tests the shunts only after they are sent to her post-surgery, and that she was definitely interested in my shunt(s). I got her business card and told her about imaging that has been developed in Scotland that piggybacks off of current MRI and CT scans but is supposed to be much more accurate, and it just so happens that she is supposed to travel to Scotland in two weeks. In another talk she gave much later in the conference, she mentioned autoimmune diseases, and I’ll be seeing a doctor that specializes in mast cell disorders next week; I’m going to speak to him specifically about my issues with the shunts and about contacting her and speaking with her regarding shunt rejection. Not a bad start for networking!
But with the good comes the not so good. Another talk I attended was facilitated by a neurologist and a neurosurgeon who were experts in normal pressure hydrocephalus. That is one of my placeholder diagnoses and they kept talking about enlarged ventricles on MRI and CT scans. I asked if it was possible to get that diagnosis without the enlarged ventricles, and they said no. I talked to them afterwards and quickly covered my symptoms and demonstrated my unusual ability to move the fluid around in my brain. They actually became very condescending and a little pissy, asking if I had considered the Mayo. I thanked them and left the room.
At another session, there was a representative from the Social Security office talking about the process of filing for disability. He opened the session by saying that he actually never handled disability cases where health was involved – I mean, when it’s a health conference, why send someone who is knowledgeable? I raised my hand during this one too and asked two questions: 1) Is it correct that since my request for a hearing was filed in early February of 2016, it’s pretty backed up and I shouldn’t expect a hearing to be set until July or August of 2017? and 2) I was told that even though I can’t see well, that my arms and hands still work, so I should be able to get a job. What criteria is used to determine whether I should be employed when my records indicate I should be laying down for 20-22 hours a day? He said, 1) It’s not unreasonable that the hearing would take that long to be set (and I answered that maybe it’s not unreasonable to him, but it’s unreasonable to me), and 2) It’s not just my inability to see or be upright that’s considered, but also my education and my age, so yes, no matter how impaired I am, I may be “too young” to be disabled. That absolutely floored me – no wonder I have to fend off assholes telling me that every day, because that’s the idiocy that the social security office perpetuates every single day.
One session was put on by the Metropolitan Center for Independent Living right here in Minnesota and a particularly energetic and passionate woman dedicated to helping people find the best and most resources available. Of course I raised my hand and said something to the effect of, “Dude from the SSA yesterday said that even though I am impaired when I’m upright, I can still use my hands and arms and I’m only 42, so of course I’m going to be denied. Does this seem correct to you, and would you deem needing to lay down flat 20-22 hours a day a ‘reasonable accommodation’ to request of a workplace?” (In other words, can I lay on a hospital gurney while I’m ringing people out as a cashier at Target?) She rolled her eyes and said that she was told a while ago that when dealing with the SSA, never to apply logic, because what they do defies common sense. She also said that one guy was told by the SSA that he should be able to find a livable wage somewhere “folding napkins” because that was all he was capable of. I asked if there was ever any communication between the SSA and her office for them to base their findings off of, and she said absolutely not.
While we were waiting to be picked up by the short bus at the hotel in downtown Minneapolis where the conference was taking place, there were plenty of people partying and women wearing the most ridiculous heels and short skirts because the Twins were playing the Yankees at a home game. One drunk hanging with his two very drunk buddies began to loudly read my shirt, and so rather than roll my eyes and be pissed, I invited him to read the other side of my shirt. His immediate demeanor took on the tone that he was going to make fun of me, but after I gave him a brief history, all he could say was that he was sorry, and he doffed his hat to me.
Through all of this, The Saint Paul weathered some really dry presentations, and probably learned more than he ever wanted to. However, when I met his dad and stepmom for the first time on Sunday night and they began to ask me questions about my health, he answered them exactly as I would have. The Saint Paul really takes all of this to heart in addition to reminding me that we are a team and that I no longer have to do everything on my own. I mean, man, he got me paper towels because he noticed I was running low on his own – he didn’t even have to ask, and I didn’t have to tell him! Forget “don’t sweat the small stuff” because it’s the small stuff that counts!
One of the sessions I wanted him to attend (while I was in listening to a much heavier topic) was about caring for the caregiver. All of the men in my immediate family have had to put their own health and happiness on hold because my mom and sisters have had chronic and severe diseases. The Saint Paul believes he can handle whatever happens to me, but I warned him that things can change suddenly and completely and permanently for either he or I, and even with the best of intentions, it’s absolutely possible that he can be so deeply affected by this unnamed change that he’s going to lose his shit. It’s a lot to ask of one person.
So, back to this anniversary: this is also the day a year ago that my sister and her husband brought home their second rescue dog from Secondhand Hounds and renamed her June. Just recently, June has started to mimic her dog brother and put herself on the floor and position herself for belly rubs, something she never would have been relaxed enough to do a year ago. It’s amazing what thousands of dog treats and a loving family will do.
Can You Describe It To Me?
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.
The Sick and the Dating 