fibromyalgia

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.
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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.

Happy Anniversary

Posted on by akiwifreund

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.
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The Boyfriend Invasion

Posted on by akiwifreund

The Saint Paul and I have been dating for two and a half months now. Our first date was many hours long, so many that we approximated it to be the equivalent of four dates. We’ve had many dates since then where we’ve had up to fourteen hours together until I’m physically holding my eyelids up with my fingers and he’s stumbling into his shoes to go home. We’ve also fallen into the habit of not going more than three days without seeing each other. But we’ve never had a full-on sleep-over; he’s always gone home.

I live in a historic area of St. Paul, Minnesota, and every year on the first Sunday of June there is a celebration called Grand Old Days that includes music, food vendors, a parade, artists and sports/health vendors. Attendance has been anywhere between 170,000 and 270,000, and attendees can even print a bus pass for certain routes to park and ride to this area for free. It has gotten so large that this year they have expanded the festival to the whole weekend instead of just Sunday. My flat just happens to be right next to one of the sound stages – and I’ve checked the lineup, doesn’t look promising.

Healthy me would have been absolutely thrilled. This is the stuff I used to live for, and it’s right at my front door. But the new me has to come to terms with the fact that I can’t walk a couple of miles or stand for hours to listen to live music or spend money on food and pottery. The thought of trying to navigate throngs of people while my brain is being squeezed and my eyes are drooping gives me extra anxiety. If I’m being completely honest I can whine and say that it’s not fair, but then who in the world can I blame that on?

The Saint Paul has opted to come over Friday night so he can score a parking spot and not have to stress about it after that. We might run out to get a few groceries, which will require us planning out meals for two whole days together, and then he’ll head home Sunday night. He’s going to try to borrow a camp chair for the parade, since I have my own already – we have to stake out a place on the sidewalk along the parade route pretty early in the morning Sunday, because it’s going to get gnarly. We’re fully expecting drunks to be trying to get into my building or to be peeing in our planters or every barfing in every doorway. I’ve heard stories. Non-food businesses are now in the habit of shutting down completely for this festival.

Other things take planning too. I’ve suggested that he bring over his favorite pillow to help him sleep better (because we all know that makes a huge difference when sleeping in unfamiliar territory). Sometimes I wake up coughing because of acid reflux, so I kind of have to be ready to move to my couch (five steps from my bed) if I think I can’t get back to sleep right away. And to hear The Saint Paul tell it, he flops around like a fish when he sleeps, which does not bode well for me, the ultimate light sleeper.

Most importantly, 48 hours together guarantees that there is going to be poo involved. Knowing my GI tract means there’s going to be multiple incidents each day. I have a brand new bottle coming that should be arriving just in time for Friday that is ruby red grapefruit-scented that may prolong my relationship with The Saint Paul. I am telling you, every house should have PooPourri because everyone poops, and no one wants to die by Lysol or any other chemical stuff that you spray in the air that makes it smell like you shit out a pine tree. I cannot say enough good things about this product. Buy it. You spritz it in the toilet bowl before you unload your load, and all is right in the world.

Lastly, most of my lounging and sleeping when I am solo in my flat is done sans hair. My wigs are just not at all comfortable, and wearing them in bed actually wrecks the fibers. So The Saint Paul is going to get a full dose of me au natural, and I have warned him that once I have taken them off in his presence, I will probably lose all motivation to wear them all of the time. I like how I look in them, but they are so damned scratchy and uncomfortable, plus wearing them less will also help me to be able to keep them longer since I have no money coming in. So for your viewing pleasure, here is (a very dirty) Mr. Clean taking your day to a whole different level:

Stick It Where The Sun Don’t Shine

Posted on by akiwifreund

I rarely count myself lucky to have an alphabet of ailments, but this is one of those times – namely because I was offered the opportunity to try the Luxe Bidet Neo 185 in exchange for a fair and objective review for you, dear readers, through the Chronic Illness Bloggers network. As per the usual, please know that even though the product was a gift, all the opinions in this review are my own and I was in no way influenced by the company. I’m going to tell you that you can look away if you don’t poop, but since you and I both know you do, you might as well keep reading.

I B.S. you not, I suffer from some crazy IBS – irritable bowel syndrome. Sometimes I’m on a dead run from my bed to my toilet, which is a whole ten steps, because my bowels have decided they want to release the Kraken…again…for the fourth time in five hours. There are times when I have wished I could hose myself down after every episode. There are times toilet paper has felt like rows of shark teeth because I’m wiping my poor abused bottom for the umpteenth time. I think I responded within 30 seconds of this being offered to our group because I was wishing for it and it suddenly appeared.
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I am confident with putting mechanical stuff together, but not so much plumbing (though I did once take apart my kitchen sink in Phoenix). I talked my step-dad into installing this gadget when he was in town on babysitting duty with my mom for my nephews one weekend. We put a bucket under the water line after we turned off the water during the transition, which I strongly recommend you do as well. He asked me to note in the review that he wished that the part connecting the water lines was metal rather than plastic. In fact, this entire unit is plastic with the exception of the water line, probably to keep costs contained. It took him about 5-10 minutes to get everything set up correctly.
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Now for the good stuff! Wait, wait – I live in a really old building dating from approximately 1910, and who knows how old the toilet is (I didn’t look at the lid for a date), so just know that I thoroughly cleaned the toilet before photos. I take no responsibility for decades of filth and disrepair from previous tenants. It even looks like some half-wit tried to flush grout at some point, but there’s not much I can do about that. Onward ho.

When I told my step-dad that I would be including pictures with this review, he squealed with laughter. I think he was disappointed when I sternly said I wouldn’t be posting those pictures. But then he squealed again when we discussed the fact that the water was coming directly from the pipes without being heated first.

So here’s the logistics: I’ve included a copy of the card with the instructions because I had to read them a few times myself first before using the Luxe Bidet Neo 185. It can be a little intimidating to have something pressure washing an area that only a few boyfriends and GI doctors have had intimate knowledge of. After the first few tries, you shouldn’t need a queue card.
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Basically, the “second nozzle” in this scenario refers to whether or not you are a girl person and your parts are located in an area that would benefit from a nozzle that reaches forward further than the other one taking care of the brick layer.

For my first sit-down, I was a little scared. I knew that water would be chilly. There was a good chance my apartment neighbors would hear me whooping and hollering from the startling freeze-out of my back door. I’ve been trying to think of the best way of describing it, and all I can come up with is that it feels like someone is trying to suddenly and quickly stuff freezing cold cotton balls up my keister – maybe Lucille Ball or Carol Burnett were somehow acting out a skit with my hiney as the punchline?? All I can say is that you just need to rip the band-aid off and get through the initial try, because you’ll get used to it.

As far as the “second nozzle” and girlhood goes, I found that if I sit upright, it doesn’t do me much good. However, if I lean forward, then more of my bits get cleaned – but again, with the shockingly cold water.

Look, this does the job. I really have gotten away from using those demon “flushable” wipes. They have been deceptive with their marketing. Entire communities are becoming backed up because Charmin and Cottonelle and their knockoff competitors have created these heavily perfumed wipes that don’t actually disintegrate when they’re flushed; besides that, your parts don’t fare well with all of that perfume hanging out on your bits. I am trying not to be that person in my very old building who clogs up the pipes (though I have managed to collect everyone else’s hairballs in my sinks and tubs and plumbers have made numerous visits here). I have sent these wipes packing like ex-boyfriends that I have also grossly misjudged.

Back to the bidet. Here is what it looks like with the lid closed:
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The device is actually installed so it is attached between the bowl and the seat so it stays secured:
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As promised, I did not take pics of the bidet in action on my tushie, but I did take pics of the “nozzle cleaning” mode:
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(Where the bubbles appear in the bowl is where the water is shooting out of the water feed, presumably so the nozzles can have “debris” power washed out.)

If you are interested in purchasing this product, it is offered where anything in the universe is offered, on Amazon (and don’t forget to select your favorite charity through smile.amazon.com so that a certain percentage of your purchase is donated by the company every time): http://www.amazon.com/dp/B00P2XZDGG

You can also go directly to their website for any product information: http://luxebidet.com/

I have to say that I will be trying to hang onto this product for as long as I can.

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:
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I always, always check labels to see what’s going to be invading my body, so here’s the ingredients:
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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:
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The size of the capsules are pretty standard:
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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

Spare Some Change?

Posted on by akiwifreund

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

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

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

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

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

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

Now You See Me

Posted on by akiwifreund

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

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

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

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

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

When Life Hands You Lemons

Posted on by akiwifreund

Another article has been posted on Patient Worthy! The picture is of lemons from my tree in Phoenix, something I dearly miss. My body is rebelling and my dates are in retrograde. Where’s my unicorn??

Hello Tremors, My Old Friend

What I Know, What I Don’t Know

Posted on by akiwifreund

Okay, first of all, a very specific search appeared on my radar yesterday: “Indian sites for compression hose fetish.” Hats off to your freak flag flying proudly, whomever you are. Also, hats off to wanting your objects of desire not to have to suffer from varicose veins. I’m sorry that my mention is probably repeatedly bringing you back to my blog; I wish you luck.

Second, I got a diagnosis.

I’m going to start where I think I should, and that is May of 2009. I was living with the very controlling and very violent Drummer #2 in a beautiful 3 bedroom/2 bath on a man-made lake. My friend who is a CPA and has taken care of my taxes for 16 years as of this year flew down from Cincinnati. Drummer #2 was on the verge of nearly smashing my head with a drinking glass, but I didn’t know it. He made me feel like absolute dirt because my friend was visiting, so much that the friend had to stay at a hotel rather than in the spacious home we occupied.

My friend rented a car so that we could run around the state of Arizona, and most importantly to the Grand Canyon. We hiked down into part of the canyon; it was not easy for me because I had already had fibromyalgia since I reached adulthood, but I did my best to keep up. I was so happy that my friend had made it down to visit, even though the nastiness of Drummer #2 put a damper on things. Drummer #2 didn’t accompany us and that was absolutely fine with me. I wanted to be able to relax. My friend flew home and life went back to walking on eggshells to try to not make Drummer #2 angry – which proved impossible. The week after that trip was when everything went down with the asshole and I moved out in a hurry.

Fast forward to October of 2009: I went to the emergency room because I developed a stiff neck and excruciating pain. Every time I moved my neck I cried. I didn’t sleep for four days and was starting to hallucinate. The ER doctor had no explanation for me because I didn’t have any other symptoms like a sore throat or a fever. He sent me on my way with muscle relaxants. The pain didn’t abate for a full week.

Around the same time, the naturopath I was seeing started documenting new symptoms for me, mainly that I had a constant rocking feeling, and I was always nauseated. We tried different remedies including Dramamine, but nothing even made a dent.

Have you thought up a diagnosis yet? Just wait.

In July 2010, I developed crushing fatigue. I drove over to San Diego mid-month to spend time with a man from Germany who made yearly trips to Comic-Con, the big one. I struggled to walk a few blocks between my hotel and nearby restaurants. He was used to walking up to ten miles a day; I felt a bit ashamed because I felt as if I embodied the lazy American stereotype. I was also plagued by deep bouts of vertigo to the point where I nearly fell down an entire outdoor cement staircase.

During the last week of the semester at school in July, I had to drop out and not take any finals. Fatigue and vertigo ruled my life. My parents were concerned because I spoke like a zombie, no intonation – very unusual considering I was a theater major in school. My speech was slurred, the top portion of my face became paralyzed, and my head began to nod uncontrollably. Because my body was under so much stress, my cortisol levels shot up to ten times the normal amount.

Have you guessed it yet?

In July of 2011, I finally started getting relief from the pressure in my head because a neurosurgeon installed a shunt. However, I had a total of 10 shunt surgeries in 46 months because my body fights them, clogs them, breaks them, strangles them. I have had horrible abdominal pain since July 11, 2011, because that is the first day a drainage catheter began living within my peritoneum and my small and large intestine, and there is a war being waged 24/7.

46 doctors and two states later, a naturopath in Saint Paul suggested I get some blood tests for Lyme disease. I ended up having to pay full price for them up front because they were not covered by insurance/medical assistance. I will admit that I didn’t think I had Lyme but I just wanted to rule it out like I had done with everything else up to that point. Two of the tests had inconclusive results; the third one lit up like a motherfucking Christmas tree.

I have late stage aka chronic Lyme, and have had it for nearly seven years. It wasn’t on anyone’s radar. Why should it be? I didn’t have a bull’s eye rash. I lived in Arizona, a state with a very small tick population compared to other states. The CDC has very strict guidelines about what can be reported for Lyme and I may not fit their parameters; however, I am still going to contact the state health board and let them know I was infected while I was a resident in the state. I think that only 8 cases have been reported to the CDC for Arizona. I don’t even know if they will take my data because I was diagnosed based on antibodies specific to bacterial exposure, and they only want tests showing the bacteria, which may not be detectable because of the time that has passed.

I know that most of the doctor visits and labs are not covered by insurance, so I will truly be destitute in short order. They are not covered because insurance companies and even the government get bucky about late stage/chronic Lyme, sometimes refusing to acknowledge it exists. There are now temporary laws in place in Minnesota that allow physicians to prescribe antibiotics far longer than they have before, for years instead of months, and the law is set to expire in 2019. I feel like my diagnosis is sitting on the cusp of being dismissed and being accepted. I don’t know how they will deny that my facial paralysis ties into the positive results on the blood work, but I’m sure they’ll find a way to tell me I just need counseling. It wouldn’t be the first time I heard that.

I don’t know what will be irreversible with the neurological problems when treatment starts. I think the facial palsy and ptosis may go away. I think the tremors will take years to adios if they stop at all. The left side of my body has lost some sensation. For example, when I am descending stairs, I have no concept of the pressure my foot exerts on the steps (and vice versa) and so must go very slow. I have been doing exercises to counteract the bed rest and try to gain some of the muscle I have lost, but I always feel like my nerves are disconnected on my left side, and I tire much more easily when I work on that side. I’m also having some cognitive difficulty including word recall. As I type, I fight to spell words correctly – I have developed some weird form of dyslexia. If you knew how particular I am about spelling, you would be as alarmed as I am. Sometimes it takes me a dozen tries to write single words correctly that would have been a breeze previously. Ultimately there is a 50/50 chance that treatment will work, and it may take years to get any positive results.

Besides notifying the board of health in Arizona and Minnesota, I have decided to write letters to my team of doctors in Arizona to let them know about the diagnosis. I am not trying not to think in terms of, “Oh, if only someone would have tested for Lyme, I wouldn’t have had to have 10 brain surgeries.” Honestly, the disease has really fucked up my body, and it’s possible I would have needed the surgeries even with the right diagnosis.

If my symptoms do abate, I’m going to have a serious conversation with some neurosurgeons about removing the current shunt. It has adhered to my chest and the abdominal pain is still constant, and I just think I would have an easier time without it. However, that also leaves me more vulnerable to CSF leaks – and I don’t ever, ever want that pain again.

Lastly, I don’t know if this is a “rare” disease. The data is poor. On a survey of health, chronic Lyme rated the worst for quality of life as outlined in this article – worse even than congestive heart failure, multiple sclerosis, fibromyalgia, diabetes and depression. In other words, I truly won the shit cookie.

Chronic Lyme Disease

 

Product Review for NatraCure

Posted on by akiwifreund

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

http://natracure.com/

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

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

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

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

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

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

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

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

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

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

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

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

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

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