Big Help In A Little Package – TechCare Pro24 Ultimate Massager Review

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review 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.

Back in 2007, I had a beast of a knee operation. My right patella (“knee cap”) was tracking wrong, meaning it was slightly dislocated, so it would cause all kinds of problems as I bent and straightened my leg and my patella slid all over the place – but not exactly where it should have. I also had damage to the underlying cartilage. Before surgery I was required to go through months of physical therapy to strengthen the surrounding muscles, and after surgery of course I had to recover. It took me a year to straighten my leg.

Anyone who has been through orthopedic surgery has had a run-in with a TENS unit. I was issued a big, black carrying case with a handle, multiple square pads and a control box with a dial. The controller had an on/off switch and the dial to change the intensity of the charge, and that’s it – no frills. You got what you got.

I didn’t have any expectations with this TechCare Pro24 Ultimate Massager, deliberately.
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In actuality, I was pleasantly surprised. The controller feels like it’s made of high quality metal, not cheap plastic. It has the capability of running two lead lines at a time, though the user can choose to run one lead at a time. The lead lines themselves are considerably long, which is useful if you need to reach around to the back of your body for any reason (which, if you’re anything like me, you will).
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I’ve been trying to walk outside while the weather has been cooperating, because I’m trying to get stronger. I have a lot of joint pain because of fibromyalgia, plus I’m in bed a lot to keep the pressure off of my brain, but the downside is that the rest of my body pays the price. Since I’m walking outside there’s a lot of variation in the elevation and terrain and my muscles and joints very quickly and loudly rebel. It’s the perfect time to put the TechCare Pro24 Ultimate Massager to the test.

I want to pick the right size of pad according to where on my body I want to attach the pads. This unit comes with three sizes:
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I chose to work on my right hip, which never fails to make its presence known. The big, rectangular pads are the best for that area of my body, so I decided to slap one on my back right flank, and then one on the top of my right femur.

The TechCare Pro24 Ultimate Massager doesn’t run on willpower alone; it needs actual electricity to roll. I’m always in front of my laptop, so I chose the option to hook up the unit to the USB portal for the juice.
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So as I had everything hooked up and charging, the next step was to choose the actual mode that would work best for what I wanted to accomplish, which would be to relax my right hip. I pushed the slide button over on the top so that the unit turned on, and then I could see the different choices for the massages for the most helpful option. Every time a different mode out of the six options are chosen, the strength returns to the lowest intensity so that the user can change it to his or her most tolerable level. I think this is a good thing because some modes felt more stinging than others, depending on the intensity.
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My favorite option that I found for my hip is the one that appears with the number “1” in this picture. As you can see, I didn’t even have to go to half intensity to feel the effects. The timer starts at 15 minutes but can be reprogrammed all the way up to 60 minutes.

At one point a friend called during one of my sessions, and I was so relaxed that he asked me if he had awakened me from a nap.

I did try it on other areas of my body – my neck, my left shoulder, my right quadriceps – and I tried out the other modes. The best thing to do is try the modes and strengths and find the best combination of style and length of time, because there’s no one-size-fits-all like there used to be with the old TENS units.

One extra goody that is included in the package is a chart of the human body and suggestions of where to place the pads to relieve certain pains.

This TechCare Pro24 Ultimate Massager is light years past that unit I had to use ten years ago for my knee rehab, and is much more affordable to boot. You can find it here – check it out!

Retrain My Brain – Gupta Amygdala Retraining Programme Review

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review 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.

This particular series, The Gupta Amygdala Retraining Programme, is being offered by a doctor who was laid low by chronic fatigue syndrome (which I will shorten to the commonly known acronym CFS), which is also referred to as myalgic encephalomyelitis (the acronym ME for short). The Centers for Disease Control states: “CFS is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms affect several body systems and may include weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, which can result in reduced participation in daily activities.” (https://www.cdc.gov/cfs/) The CDC also indicates on their site that despite trying their best to figure out what triggers CFS, they haven’t pinpointed the cause. It could be a number of infections, it could be autoimmune related, it could be something in the central nervous system; they’re just not certain.

I was given this program because I have fibromyalgia. Fibromyalgia shares some of the CFS/ME qualities – mainly crushing fatigue and pain that does not go away with a good night’s sleep. Dealing with constant pain and fatigue also changes your brain and your outlook, affecting the way that you interact with the people around you, as well as your ability to handle your own sickness, or wellness, as it were.

The very first thing I noticed when I opened up my packet was this map from Dr. Gupta.
20170522_092902If you can’t tell, this piece is quite large and almost covers my entire area rug. As we found out, it is an interactive practice piece that you actually stand on and use to help retrain your brain to stop negative thinking.

The other items included in the package were a workbook and a set of audio and video DVDs.
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I was signed up for weekly interactive web meetings as well. In our first meeting, we were introduced to Dr. Gupta, and informed that the web meetings were actually the most important part of the program, and that the DVDs, workbook and practice poster were supporting materials.

The web meetings were 12 weeks long total, so it is quite a commitment if you decide to join the program. And there is a lot of material to cover. However, if you think about it, some of us have been sick for years. I’ve been sick for two decades. 12 weeks is really a drop in the bucket. It’s just a matter of adjusting your schedule and making room, just as you would for a physical workout program. You want to lose the weight? You do an hour at the gym. You want to lose the disease? You do a few hours a week at the Gupta program. 

So what is amygdala retraining? Basically, it’s to stop the negative feedback loop so you can start healing. Your body feels bad, so your mind gets stuck thinking, “I’m not good enough, I don’t don’t deserve friends if I’m going to bring them down, I don’t deserve love, I’m a terrible person, I’m a loser, I can’t do anything right, I hate my body, I’m going to stay sick forever,” etc. If you can get rid of that negative feedback, you can also retrain your brain to start a positive flow of thoughts, including, “I will allow my body to relax, I will feel comfort, I will smile, I’m choosing health and happiness, I trust myself.”

And back to that interactive poster that’s on the ground: That’s the “Stop! Stop! Stop!” technique that Dr. Gupta often refers to as part of the retraining. He encouraged us through the course of the initial training to actually follow the steps on the poster: think the negative thoughts, then hold out our hands and think or say, “Stop! Stop! Stop!” Then we would breathe and smile, return to our loving self, then choose to take the loving path and be kinder to ourselves in our thinking, then visualize health and happiness. We would repeat these steps over and over again – at first slowly, then faster, as if picking up anything that feels clunky at first but then suddenly becomes second nature.

Throughout his sessions he often took breaks for us to breathe, or meditate. We also had time to ask questions or interact. Dr. Gupta warned us that there would be times when emotions would bubble up and sometimes get the best of us. I tend to be pretty stoic except when it comes to dealing with my neurologist and neurosurgeons, so I was surprised when even I had a web session that affected me emotionally. The point is to not hold everything back so that our ego doesn’t get in the way of getting better.

The DVDs and audio CDs are helpful because there are some meditations included, and meditation is one area where I always need improvement and assistance.

Dr. Gupta does advise for anyone going through this program that the changes will be gradual, and to not expect anything earth-shattering immediately; after all, anything shocking would set us back, not make us better. Six months would be a good goal for feeling a significant improvement if you do the work with sincerity. 

I’m grateful to have these materials at hand for the long haul so I can refer back to them as often as I need to – because there’s so much to learn, and I’ll definitely need a refresher from time to time. And Dr. Gupta records all of his sessions so that we may go back and rewatch (or if you couldn’t make it to the session in real time, you can watch at your convenience). I did personally notice a certain calmness and lightness after each session, and I do feel like my attitude has shifted towards all of my diseases; I’m choosing right now to be loved and to be worthy of love, and maybe that will shift again in the near future to another positive focus as I journey on.

Dr. Gupta’s Website:  http://www.guptaprogramme.com/

MedCline For Heartburn – A Crazy, Functional Pillow System

Do you suffer from heartburn or GERD? I have, for years. I’ve gone through a number of tests to find the cause of it and also to make sure that the valve between my stomach and esophagus isn’t degrading from the acid backing up (it isn’t). It is the absolute worst feeling to wake up because acid comes up all the way from my stomach into my mouth at night. I’ve also tried a combination of medications, but sometimes they don’t do the trick, and it’s not always safe to be on them long-term. Now I know my acid reflux is likely caused by my mast cell activation syndrome. 

So I saw an ad for this pillow system and decided to give it a try. It was especially appealing to me because I had surgeries done on the right side of my body for three years and had to lay on my left, and had torn up my left shoulder terribly – I’m still doing physical therapy, getting injections and dealing with regular pain continuously now. The base inclined pillow looked like it would help me a lot because it actually has space tunneled out for the shoulder and arm:

What you see propped on top of the wedge is the body pillow that is also available with the system. You can buy the wedge by itself, but honestly, I don’t recommend it; I’ve tried to sleep without it, and it’s not at all comfortable to me. Here’s a pic that shows more of the body pillow, which is filled with memory foam bits:
2016-08-25 11.15.10Both pillows have covers that can be unzipped and washed, which I do often. 

To sleep, I first tunnel my arm through the wedge, and then I wrap my body around the body pillow for support. MedCline recommends that it’s best to sleep on your left if you are able because of the shape and functionality of the stomach, but it’s okay if you aren’t.

MedCline recommends that you buy your pillow according to your height and weight. If you meet one requirement but not the other, I would say go with the height and not the weight, because where the wedge inclines makes more of a difference for you than anything else.

The pillow system is shipped for free and they have a 60-day money back guarantee. MedCline wants you to give the pillow system a try because they know it will take some getting used to, but they believe their product is worth the time and effort. I believe it too. I showed my pictures to my gastroenterologist because he had never seen or heard of it before, and he knows countless patients who sleep in recliners or who purchase traditional wedge pillows or try to sleep on stacks of whatever will keep them propped up at night.

I agree with MedCline – it does take time to get used to. When I sleep on it, I don’t have problems with my shoulder or arm hurting or going numb, and I don’t have problems with my acid reflux. That was my ultimate goal when I bought it.

immunizeLABS Has You Covered

Whenever I venture out in public, I try not to think about all of the surfaces that other people have touched, and what they have touched before they touched those surfaces. But I have to. My immune system severely lacks IgG3 and IgG4, which means I can’t fight off microbes like normal people can, and I’m blessed (should I say blessed?) with fibromyalgia and irritable bowel syndrome, which make me more vulnerable to illnesses and tougher to recover. The most recent confirmation that I was born with mast cell activation disease doomed me to vulnerability. I know what I have, I just gotta find a way to fight stuff off. Besides being diligent about washing my hands and not touching my face, what are my options?

I was contacted by immunizeLABS to try five products in the thick of flu season. I have been given these products as part of a product review through the Chronic Illness Bloggers network. Although the products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.

First I’ll cover three supplements: Boost, Shield and PainRelief.
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Immediate basic impressions were that I was thrilled that these were room-temperature stable and that I didn’t have to store them in the fridge. I have so much more success with taking things on a regular basis when I have them sitting in front of me than I do when they are tucked away in a fridge. Also, you’ll notice that the contents are sold in dark blue bottles; most companies will do this when the contents are photo-sensitive and the ingredients degrade when exposed to light.

The most important thing about all of these products (including the items that follow after these three) is that they all contain colloidal silver. Colloidal silver is known to be anti-microbial. In fact, I purchased a quick-drying travel towel that is woven with silver threads because it is specifically anti-microbial. If you have done any kind of studying on your conditions (if they overlap with mine), you know that microbes tend to be our enemy and overtake our systems and are hard to get rid of.

immunizeLABS formulated each of their products to have a specific outcome. For instance, each one does contain different values of the colloidal silver, as well as ginger, cinnamon bark oil and medium chain triglycerides, but then the PainRelief contains curcumin, which has been used for centuries as an anti-inflammatory. You wouldn’t want to leave home without Shield, which included in its ingredients is the all-important vitamin C in a super dose, but there’s also other supportive items that you don’t have in your medicine cabinet. Add Boost to your routine, which includes glutathione, which is a supplement that assists with repairing and building tissues, making chemicals and proteins, and generally “boosting” the immune system. (Their complete ingredient lists are available on their website: immunizeLABS)

The products state to start with 1 teaspoon of product in 2-4 ounces of filtered water in the morning at a minimum of 20 minutes before you eat, gradually working up to 2 tablespoons of product in water over a week’s time. Here are pictures of what each look like before they are mixed in water (left to right: Shield, PainRelief, Boost):

The product labels say the flavors are “chocolate.” This is the only problem I had with the products. I know that these contain all kinds of things that are good for me, but I could never get past the flavor. My dad and uncle owned a hair salon for decades and they taste like what they use for hair coloring. I’m sorry. They just do. So what do you do? You mix it fast and you chug it fast.

So in the thick of flu season, I can say that I have successfully avoided getting taken down by any nasty bugs, despite being out often in public. I’m not sure if my inflammation has been systemically reduced, but not getting sick is huge for me. I did feel more clear-headed – brain fog is a real challenge – and my digestive tract acted like it was on an actual schedule rather than all wacky. I could also tell that my pulse was not jumping around after ingesting the cocktails. When it does, it’s an indication to me that my blood sugars are spiking or I’ve had something I’m allergic to. I will consider this an overall win. 

One of their other products may have helped to protect me, and that is their Breathe Easy Nasal Spray:
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I’m not a sufferer of migraines so I can’t give an opinion from that perspective. However, I often suddenly develop congestion – and I’m not sure if it’s because I’m experiencing a mast cell trigger, or if there’s pressure building up in my cranium from the cerebrospinal fluid building up. The Breathe Easy spray is a mixture of the colloidal silver plus sea salt, certain essential oils, as well as horseradish and cayenne pepper (say what??). I’ve been giving it a couple of pumps before I go to bed as well as when I feel stuffy, or when I come in from being out in public, and again, I haven’t gotten sick and the stuffiness goes away. I also consider this to be a “win.” In fact, you can use this one as often as you feel the need, so I think I’m going to do that right now.

I’m saving my favorite for last, and that’s the OralMiracle.
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I have all kinds of challenges with my mast cell activation disease, including my mouth burning and suddenly developing allergies and sensitivities where I didn’t previously have any. Even commercial brands that are on the market that boast to be alcohol-free still make my mouth burn. I also want to have white teeth just as much as the next person – why should I have to sacrifice that just because I react to strong chemicals? Again, this product contains the colloidal silver to control microbes; imagine how much of a boost it gives your mouth to have that anti-microbial assistance when you’re trying to prevent tooth decay.

The recommendation on OralMiracle is to swish 2 teaspoons for 3 minutes; “The longer you swish, the deeper the healing.” The taste is pleasant and most importantly, my mouth doesn’t burn. They strongly recommend that you don’t eat or drink for the rest of the evening so the product isn’t washed away. My budget is really, really limited right now, but this is the one item that I would spend money on again and again.

Please visit immunizeLABS for their entire line of products as well as their ingredients to make sure that they will be safe for you to use.

Have a G’Day Every Day with Oska Pulse

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review 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.

First, let’s talk about pain. I’m an expert on it. I’ve been an old lady since about the age of 23, when I got my first diagnosis of fibromyalgia.

It hasn’t stopped there. Now that I’ve had 10 brain surgeries and have been bedridden for 6.5 years, I have some very specific challenges. Staying in bed triggers the fibromyalgia. But I have to lay flat because when I’m upright, fluid pools in my brain and presses on my midbrain and spinal cord and causes all kinds of balance, vision, and pressure issues, and puts me at risk for seizures and strokes.

For three years I had surgeries on the right side of my body and could only lay on my left side. That put tremendous pressure on my left shoulder. Twice before I had to go through physical therapy to treat an impinged (“pinched”) nerve in the shoulder. For this last year, however, the pain was much, much worse – so bad, in fact, that I broke six teeth because I was clenching my jaw in pain. My doctors finally figured out that I had torn tendons and the actual capsule that houses the shoulder bones from all of the time I spent on that side of my body.

We tried everything: ice, heat, anti-inflammatory meds, low-grade opioids, muscle relaxants, meditation, stretching, a brace during waking hours, a brace during sleeping hours, multiple injections, light weights, joint manipulations…everything except sacrificing a chicken. For an entire year, I was in incredible pain. I couldn’t even close a cupboard door.

The surgical site side was changed to my left, so I started having to sleep only on my right. That gave my left shoulder a break, but then I started having problems in my right hip. I have to use a cane for walking because of my terrible vertigo and I walk with the cane in my right hand because I’m right-dominant, and I knew I was really going to be in trouble if both sides of my body were going to be rendered useless by pain.

Then I was contacted by Oska Wellness, Inc. to try the Oska Pulse.

Where do I begin? First, it actually physically looks too good to be true. That was my first, honest thought. How could something so small and seemingly simple do what nothing else that doctors were trying to achieve for an entire year, throwing everything they had at me? I mean, come on – a little space ship? And we all know about those devices from those ads on TV that never amount to anything but you can get them for 3 easy payments of $29.99, and they sit in the back of your closet until you move or you divorce…

But the Oska Pulse isn’t that.
2016-11-21-13-16-08“Oska” – Australian for Oscar, the name of koala who was helped by this device after he was badly burned by a fire!

The Oska Pulse is a battery-operated, rechargeable device that gives off a pulsed, electromagnetic field to treat pain and edema. That’s the very simple explanation.

So the Oska Pulse turned into my chicken sacrifice, if you will. The note card that came with it suggested that for chronic pain, I should wear it 4-6 times at the site of pain for the first week. I immediately pushed the little round button that you see at the bottom of that picture above and placed it on my shoulder.

Now, the Oska Pulse comes with a stretchy sleeve with Velcro closure if you want to strap it on and have it stay in place. I tried that, but since I don’t get up and move around much, I quickly determined that I didn’t need to do that. You can see by the fuzz on the device that there is some grippy rubberized material on the Oska Pulse that is good for keeping it in place. All I had to do is prop the Oska Pulse on my shoulder, press the button, and let it do its thing for a half hour until it beeped at me three times to indicate it was done.

After the fourth day, I started to notice a difference in my shoulder. I could pick up items heavier than a magazine or an empty toilet paper roll. People, this is huge: I already automatically lost the use of one hand because it was always occupied by the cane I had to use to assist me with walking. I can’t stress how bad this was, especially since only yesterday I got the last of my teeth replaced from all of those that I had broken in pain. I started being able to reach all the way over my head, and I was able to increase both my repetitions and the weights of my physical therapy exercises.

So after I saw success in my shoulder, I started moving the Oska Pulse around my body. This little guy was getting a workout! But that’s okay! The Oska Pulse stays charged for about 15 sessions lasting 30 minutes, and then it needs another charge. The charger can be hooked up to a laptop or it can be plugged into the wall socket, as it has both capabilities. 2016-11-21-13-17-132016-11-30-17-18-36Here is the Oska Pulse in action, in the elasticized sleeve with the blue pulsing light on. You won’t feel a thing, truly. There is no buzzing, so the blue light will be the only way you know that it’s on. Are you shocked? You shouldn’t be! This is a device where taking away your pain will be completely painless. That is the best part about the Oska Pulse.

I didn’t tell my physical therapist about the Oska Pulse when I went in for a visit after not seeing him for a month. He was expecting to see as much improvement as he had seen the previous months, which was zero. Instead, he was stunned to see me lifting my hands over my head, bearing weight, and best of all, wearing an underwire bra that clasped in the back (previously the girls had been relegated to a sports bra that I could twist into with one hand that left them sadly sagging and flopping like I’m undeniably 42, which I am, and does nothing for me being able to attract potential suitors, even under false pretenses). My physical therapist was ready to doubt me or tell me to back down, stop being so enthusiastic, to slow my roll; but he nearly fell over with how well I was doing. He was stuttering.

This is a long post, but hang with me a little longer. I gave up my Oska Pulse, and potential pain relief for a time, because I wanted to know if it was just me. Was I just thrilled to get this product and was I blinded by the blue light?

I had given the team at Oska Wellness a heads-up that I might be doing this, but I gave the Oska Pulse to my sister for a test drive. I didn’t tell her much – only that she needed to charge it if it didn’t stay on for at least 30 minutes when she turned it on, and that she should wear it on spots that she was having pain. I gave her the instructions, the charger, the unit, and the stretchy band with the sleeve, and set her free. I did tell her that it worked for the COO’s dog when the dog was in pain because I knew that would tug on my sister’s heart strings – her dogs come with her to work every day, and we are all suckers for their love. If the Oska Pulse objectively worked for the dog, why couldn’t it work for us?

She made an effort to religiously wear it for two weeks, during which time we didn’t discuss the Oska Pulse at all. She didn’t tell me where she was placing it or how often she was using it. At the end of the two weeks I asked for it back and checked in with her. She had decided that she needed help with her neck. The easiest way for her to wear the Oska Pulse was to slip it into the flipped down hood of her hoodie – she didn’t even have to strap on the elastic band, and no one had to know she had the Oska Pulse going. She opted not to try to sleep with the device going and just deal with it during waking hours.

Her conclusion: She has greater range of motion in her neck and less pain. She used it only on her neck and no other areas of her body. I’m not going to reveal her health conditions, but they are just as serious and chronic as any of my fellow chronic illness bloggers. I honestly don’t know if she’s going to be missing it in a few days, but I can tell you that I missed the Oska Pulse terribly while she had it, because pain started to creep back in. Now that it’s back with me, I pretty much have it duct taped to me – I’m not going to give it up again. I have it working on my right hip and the bursitis that has developed there.

Feel free to find out more info on their main website at Oska Wellness or on Facebook at Oska Wellness (Facebook).

Just released on June 13, 2017: A third-party, independent study showing that Oska Pulse can significantly reduce pain and improve mobility.

Benefits of ordering a Oska Pulse device:
$55 off with discount code sickdating by visiting Oska Wellness
– Drug free
– No known adverse side effects (but please keep away from medical devices affected by magnets including pacemakers and adjustable shunts)
– Financing is available through PayPal!
– Internal battery lasts up to 4 years
– 90-day money back guarantee!

Gold, Frankincense, Myrrh, and Brain Damage

Happy Holidays! Froeliche Weihnachten! Happy Hanukkah! Happy Kwanzaa!

What is Santa/Kris Kringle/Krampus/Monito-monita, that crazy, overgrown elf/Viking who has nothing to do with a mythical baby born in a stable bringing you this winter solstice/Christmas/yule?

I already got my gift, but nothing like what the three wise men brought across the desert. At the beginning of November I saw a new neurologist who agreed to give me everything that I seemed to be missing: an upright MRI, a neuro psych test, and keep me on as a patient, as confusing as my case is. Three days after our initial meeting the doctor who administers the neuro psych tests had a cancellation so I didn’t have to wait four months. A neuro psych test is a series of tasks to evaluate my real brain functionality – not just the few words a doctor might ask you to remember a few minutes later, like “pencil,” “dog,” and “purple.” I had to take many different kinds of timed tests, including drawing, making linear connections, making word associations, and answering personality questions. That’s the short version.

I didn’t have any problem with drawing pictures from memory. I was shown simple lines and boxes and then given a blank piece of paper a half hour later and could draw them in sequence perfectly. However, when it came to things like giving a list of words that began with a certain letter in the space of 60 seconds, it was like the bottom of my brain fell out. I could only give four words for the letter “A,” and they were very simple words like “an” and “apple.” There were four letters total, and each letter was a challenge. I can only remember the letter “A” at this point.

There was another exercise where the tester gave me a list of words that included pieces of furniture, animals, and modes of transportation. Every time I repeated the list back, I always tried to give it back in order, I never tried to group everything together in like groups. It never occurred to me. However, if I had full functionality, it probably would have. I also could never remember more than a few words, even though I’m guessing the list was repeated more than 20 times.

They wanted to see how I could do with repeating numbers back, so they started with three numbers, then four, then five. As soon as I got to five, I started struggling. At six, I couldn’t repeat any numbers, not even the last two or three of the group. Again, it was like the bottom of my brain dropped out.

There were many other tests, but in the interest of space and to save some face, I’ll stop there. You get the idea.

A few weeks later when I could meet with the doctor who administered the test, she confirmed what I dreaded hearing but suspected: I have brain damage. Since I’ve never had an evaluation done before there’s nothing to compare it to, but she said she could tell that in some areas my knowledge base and functionality was “superior,” or above the level of a college-educated woman. However, the brain damage affected my memory and speed and speech and brought those areas down to true mental impairment.

A few days ago I went into the office for part II of my follow-up to look at the actual scans of my upright MRI. My MRI did not look good.

normalventricles

Above is a progressive MRI scan of a brain (not mine), moving down from top to bottom. As you move further down, you notice that the part in the middle gets larger and darker; that’s the ventricles. They are the four chambers that are the gold standard for figuring out if there’s a problem with CSF in the brain. This is what normal looks like.

Unfortunately, I don’t have any ventricles left. All of them have collapsed. My brain is pressing on the brain stem and I’m having all kinds of unusual problems, like my legs suddenly jerking if I’m standing and I look down briefly. Of course I have the problems I’ve always had, like the vertigo and the fatigue, and that pesky facial droop and ptosis (pronounced “toe-sis”). My new neurologist insisted that the disappearance of my ventricles must mean that I’m overdraining, but I knew that I must be suffering from Slit Ventricle Syndrome, and it means just the opposite – the pressure is crushing my brain.

UCLA has a pretty good explanation of Slit Ventricle Syndrome. I’m 100% certain that my shunt is “nearly blocked but barely flowing.” I always, always feel like my intracranial pressure is extremely high. It’s exhausting. So for now, it looks like I have Slit Ventricle Syndrome, and I’m not sure if this would have been picked up before this point – at least not two or three years ago, even though the symptoms are the same. I don’t recall that my ventricles have looked this horrific in all of my 20+ prior MRIs.

Also troubling is trouble brewing at the back of my skull. In 2013 I had two cisternoperitoneal shunts placed when my neurosurgeon was trying to find anything, anything, that my body wouldn’t reject. After we removed those and I ended up with a ventriculoperitoneal shunt, he barely got the old one out after a lot of scraping and pulling because of the scar tissue that had built up along the tract. A surgery that should have been an hour and a half turned into five hours and I was left with a huge highway of bruising from my head to my abdomen.

Unfortunately, he thought that it wasn’t detrimental to leave scar tissue in my head, and in fact may help to plug the burr hole where he drilled for surgery so I wouldn’t have any leaks. I knew what it was like to have a CSF leak; 2014 was incredibly painful when I had a leaking shunt for that whole year. The scar tissue has been increasing in diameter and it’s now growing like a tumor. From what I can tell it’s about the size of a quarter, and it’s pressing on the area of the brain that deals with memory and speech. It’s actually a long rope but it’s got a huge bulb, and if I press on the burr hole, it yanks on the area it’s attached to right behind my ear.

In plain English: My brain is being crushed. My shunt isn’t working. I’m growing my own tumor that was started by my scar tissue.

My challenge is that I’m allergic to the shunt materials. Also, now that the scar tissue is turning into a growing tumor, can we take it out without creating a leak, and when we pull it out, will the area it’s damaging have permanent damage or will it heal?

Also, can I fucking qualify for disability now? Everything that I’m reading about Slit Ventricle Syndrome says that it’s a permanent condition – there’s no going back.

Within the next few weeks (because of the holidays messing everything up) I’ll find out when I can get in with the best neurosurgeon in the Minneapolis/St. Paul area. He came highly recommended by other hydrocephalus patients when I attended the hydrocephalus conference including the mother of Olivia, the young woman who had 123 surgeries since birth and who is now aged 20.

I am also in the process of finding an occupational therapist for an evaluation that can be included in my records for my attorney and disability case.

I’m going to share the most personal thing I possibly can and have up to this point, because some of you may doubt how much this has affected me because I have created coping mechanisms. It has taken me two full days to write this post and writing even the simplest words is sometimes a struggle. But the hardest thing for me to do to date was to send out holiday cards. At one point I had to stop writing for about a half hour because I broke down in tears. Hand writing words without the benefit of being able to go back and erase them and rewrite them like I do in the computer almost caused me a panic attack because I could no longer remember how to write even single-syllable words. For the people who did get cards, there was a lot more crossing out and scribbling than I would have liked. Maybe you noticed that I started to write an “E” where there should have been an “L” first. Sometimes I couldn’t even remember how to write my own name correctly – I would skip letters.

I don’t have all of the answers. I still – STILL – don’t know what’s causing the imbalance with the CSF in my brain. I don’t know if taking out the scar tissue/tumor is going to alleviate the memory and speed problems. I don’t know if I’m ever going to be able to tolerate an appliance in my body. I definitely don’t want to hear, “But you look fine!” or “Have you tried _____?”

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Product Review: TMedPharma (3 Products)

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review 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.

First, I’m going to throw a definition your way that I recently used for another review, and that is “medical food”, which this product falls under and is defined by the FDA:
“The term medical food, as defined in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee (b) (3)) is ‘a food which is formulated to be consumed or administered enterally [orally] under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.’”

Targeted Medical Pharma, or TMedPharma for short, is producing items that are considered “medical food” that are therapeutic doses of specific ingredients meant to treat certain conditions. I was given three products because I suffer from autoimmune conditions – namely fibromyalgia, but possibly others that are still a mystery – that produce irregular sleep, overall inflammation, and fatigue.

First, I was given Sentra AM; the instructions state to take 2 capsules on an empty stomach. 2016-10-23-06-11-43
This is where I really have to pay attention. I have Hashimoto’s thyroiditis, so I take levothyroxine (brand name is commonly known as Synthroid) on an empty stomach every morning an hour before eating. It is very, VERY important to not take certain supplements or eat certain foods within four hours of taking this medication, so I had to check the label to make sure there wasn’t any vitamins C, calcium, or iron to stop my medication from working. The label states that the Sentra AM doesn’t have added sugar, starch, wheat, yeast, preservatives, or flavor. What it does have is an amino acid combination, ginko biloba, cocoa extract, and hawthorne (as in berry, which I take daily to support my heart and cholesterol issues). Also, I’m sometimes out of it in the morning, so I do this to remind myself of how many to take:
2016-11-20-13-23-29Taking the Sentra AM didn’t have me climbing the walls, but I also wasn’t dragging, so it was a nice change. I took this for the entire three months’ supply that I was given and I never had any adverse reactions, which is great because I’m allergic to so many things. My energy pickup was subtle. I’m not certain that I would purchase additional bottles…but ask me a month from now when we are in the dead of winter and I have zero zip, and I may be singing a different tune.

Theramine is the “medical food” taken twice daily (2 capsules) to reduce inflammation. This one must also be taken on an empty stomach in order to be most effective. Theramine also contains a different amino acid combination, as well as GABA (gamma amino butyric acid), cocoa extract, Griggonia extract, grape seed extract, and cinnamon. Sometimes in products that are anti-inflammatory I experience allergic reactions because they have sneaked in some form of fish oil, but I didn’t see any on the list and no warnings, and I didn’t experience hives or wheezing, so I think I was in the clear. They state that the product does contain milk (in the enzymes, most likely) but does not contain added sugar, starch, wheat, yeast, preservatives, or artificial color.

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I am going to impart some knowledge that I found out from going to a naturopath for years. If you take these products on an empty stomach, you will reap the benefits of anti-inflammation ingredients throughout your body. If you eat when you take these products, at best you will only feel benefits in your digestive tract. Take these one hour before eating or two hours after eating solid foods to make sure that you maximize the benefits.

After three months on Theramine, I have mixed feelings. My pain relief from a reduction of inflammation was subtle, if that is what happened. During these three months I was still dealing with the tears in my left shoulder tendons, which were extremely painful, and could have used the extra support. I also have just as much pain from the inflammation in my abdomen from the allergy to my drainage catheter to my shunt in my brain, and I’d love to have the stabby-stabby pains calm down. Generally, though, I felt less achy.

The third product was Sentra PM, targeted for sleep disorders associated with depression. Oh, did I mention that fibromyalgia patients, and indeed all chronic illness patients, are prone to depression? We are. Fibromyalgia patients fail to get into the sleep that brings on REM, so we rarely reach deep sleep, and we are forever exhausted. It’s a vicious cycle. We’re tired, so we go to bed, but we can’t get deep sleep, so we’re tired, so we go to bed…and often we’re told that our disease isn’t real, or we’re doing something wrong and that’s why we feel physically terrible, or that there’s nothing that will make us feel better. Enter TMedPharma with something to try to assist us in tackling this problem!
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Two capsules of Sentra PM should be taken at bedtime to promote restful sleep. I have a terrible time falling asleep and I haven’t used an actual prescription medication like Ambien for at least 13 years because of the terrible side effects (no, no getting up in the middle of the night and eating a gallon of ice cream or going to the bathroom in my clothes closet), because the morning after I would be a walking zombie, barely able to brush my teeth (sorry, former co-workers).

I’m very cautious when trying something new when it comes to messing with my sleep, so I started this on a Friday night when I knew I wasn’t expected to wake up the next morning for an appointment, and I didn’t feel like I experienced prolonged effects. The active ingredients include choline, GABA, glutamine, histidine, and tryptophan. The pamphlet states that Sentra PM provides the amino acids that are precursors to neurotransmitters that are responsible for initiating sleep. There were nights when I felt pretty tired about 30-45 minutes after taking my dose, but then there were nights when absolutely nothing could help me, and those were the nights right before big appointments and anxiety was getting the best of me. But overall, if I were to make a purchase, Sentra PM would be my first pick.

Targeted Medical Pharma strongly recommends consuming these “medical foods” under the guidance of a physician to make sure you are reaping the most benefits and not experiencing any unwanted side effects. This is something that you should take seriously; it IS possible to take too much of a supplement and cause unintended harm, and of course there is always the risk of being allergic to something.

Please check out their complete line of products on their website: Targeted Medical Pharma

Product Review: Visbiome

When people who don’t know me well ask what I do, I tell them I’m a professional patient. When I detect a slightly pitying look cross their faces, I tell them it’s not so bad, because I get to review products like this – and truly, I count myself lucky to have access to them since I have limited means at this time. Please note: I have been given this product as part of a product review 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.

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Visbiome is a high potency probiotic targeted specifically to be used for patients who suffer from ulcerative colitis, irritable bowel syndrome and pouchitis. I suffer from irritable bowel syndrome and was clinically diagnosed after a colonoscopy in 2011, but for years before that my body vacillated between diarrhea and constipation without a whole lot of predictability. I know that in general my body likes protein and veggies and punishes me for eating carbs, simple sugars and fatty foods. In other words, I won’t be heading to the infamous Minnesota State Fair anytime soon, where they brag about having deep fried Coca-Cola as a “thing.” That would lay me low for ages.

However, knowing these things, my diet isn’t perfect. I’m bed bound because of major issues with CSF getting caught around my brain stem and I’m allergic to the shunts that have been implanted and failed, so long story short, it’s impossible for me to go to the grocery store every third day for fresh produce. I also can’t spend a lot of time standing and prepping, so I eat a lot of stuff that’s pre-cut and frozen. I have also become an expert on which protein bars don’t taste like sawdust but also don’t have a high sugar content.

So, Visbiome to the rescue! As you can see from the picture, the living bacteria – 112.5 billion per capsule – is incredibly high. For that reason you must plan on storing this product in the fridge at all times so the capsules don’t lose their potency. I was shipped a 30-day supply and it was packed in ice packs in a cooler, and this will be the norm when you order it. In fact, it will be smarter for you to ship it to a location where you can unpack it and get it in your fridge as quickly as possible, so if you know you’re going to be gone from home for 14 hours, maybe it’s smarter to ship to work instead.

The recommendation on the labeling is for this product to be administered under the supervision of a doctor. This is important because because of the extremely high bacterial count in each capsule. You will undoubtedly notice a change in your digestion and bowel movements. If you experience diarrhea for an extended amount of time or other undesired effects, your doctor will advise you to either change the frequency of the dose, the amount, or to stop it altogether. Your best health is always the ultimate goal.

I read the enclosed pamphlet and it indicated that for IBS I should take 2 capsules daily. I opted to take both at the same time because I tend to be forgetful when I’m taking new medications, especially if they are only meant to be taken for a few weeks. Some of my fellow bloggers had good results splitting their doses up throughout the day.

Wouldn’t you know it? Right in the middle of my doses, I managed to get a nasty case of flu. Five days later I developed fluid in my ears which churned into two very nasty ear infections, at which point I had to go on antibiotics so my ear drums wouldn’t perforate. A few days later I also developed bronchitis. I actually think I was quite lucky to be on the Visbiome at this time because the antibiotics were guaranteed to kill off anything good growing in my gut, but this product could re-introduce some helpful bacteria. I’m also terribly prone to yeast infections, and I think that taking Visbiome helped a bit with me not having to be so miserable in my lady parts.

The term “medical food” is a new one to me but I decided to look it up because I think we will be seeing more of it. This is the definition per the FDA:
“The term medical food, as defined in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee (b) (3)) is ‘a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.'”

Please visit Visbiome’s site and pass it along to your healthcare professionals so they can review all of the product’s benefits.

To Put Into Words

Six days post-election here in the U.S., and it feels like every day is different.

The night of the election I stayed awake until about 11 pm until it was clear that Trump was going to win the electoral votes. I refused to watch TV; I couldn’t bear to listen to voices yelling in disbelief, but rather I listened to my own favorite music and instead refreshed Google and saw everything roll in real time.

On Wednesday morning I woke up with my alarm clock – or rather, I woke up with alarm, saying to myself, “Fuck, Trump is president.” I went through the motions of getting ready for an appointment; as luck would have it, my regularly scheduled counseling appointment just happened to be that morning. Above and beyond my normal anxiety and depression and PTSD, I cried for all of the kids that morning who my friend as a teacher said were scared in her classroom about being targeted by racism and ignorance because of their immigrant status and religious beliefs.

On Wednesday afternoon, I was shocked by a call I received out of the blue. Back in August I wrote a letter to the POTUS regarding the sluggish process of applying for disability and antiquated means of qualifying, when people like me are clearly disabled but can’t qualify because science hasn’t caught up to our diseases. This woman was a staff member of the Obama administration and she had the unfortunate task to call me the day after the shitty election to talk to me about my letter to make sure my immediate needs were being met. I assured her that my hospital bed finally came through (it should be here in a few hours this morning) after trying to get it since January. Then we talked about how my current governor chose to expand medical assistance (“Medicaid”) to everyone at or under a certain income level (which comes out to be around 120% of the poverty level, or $1313/month for a single person without children in my case). In two years when my governor’s term is up and he has indicated that he will not be seeking another term, our new governor has the option of continuing this, or only allowing people with children and/or only allowing people who are federally recognized as disabled (which I cannot get) to continue receiving medical assistance.

So to be clear, I could lose my last line of access to healthcare. I confirmed that with her because I just needed to say it. We both cried on the phone together.

She gave me her phone number and told me to call her in case I had any follow-up questions for her. I will call her this week to see if she has any connections at the NIH to see if I can get anyone to reconsider my case, but I think that’s all that I can ask of her.

There are so many things rolling around about Trump already. I’m not sure I can remember all of them and they change hourly, so please excuse my imperfect recall. First, there are rumors flying about his desire to only spend part of his time in the White House in D.C., and part of his time in his place in Manhattan. It can be argued that not all presidents lived at the White House 100% of the time, but that was probably before there was electricity and running water and the Secret Service and, you know, technology. It’s not like his Manhattan penthouse has a bunker in case he starts a nuclear war by being a complete asshole – and let’s get real, it’s not such a far-fetched expectation.

I’m not sure what to think about him actually making it to the swearing in ceremony. Is he truly going to trial for rape and false imprisonment of girls under the age of 18? Are those cases going to suddenly disappear just because some judge is going to feel sorry for a guy who has been elected, just like judges feel sorry for star athletes?

And Jesus H., why isn’t anyone bothered by how many times he has filed bankruptcy? When I worked for Bank of America, we had to pass strict financial checks, and I just worked in the tech area. We couldn’t be hired on if we had bad credit including bankruptcies or foreclosures or judgments. Also, during my years as an escrow assistant, I was especially skeeved out when I had to work with mortgage brokers who had no scruples about giving financial advice to customers when I knew that the brokers themselves were on their own fourth or fifth bankruptcy filing (they told me how they played the Ch. 13 system before the laws were made more strict).

After his first visit with Obama, he walked out telling everyone that he wasn’t going to reverse everything about the Affordable Care Act, specifically the bits about the pre-existing conditions. That means that he has already reversed one thing he promised the ignorant, writhing masses who were convinced that “Obamacare” was responsible for their rising premiums – not the greed of the insurance companies trying to make a profit off of our bodies at the widest margins possible.

So if Trump doesn’t get sworn in, does that mean we’re stuck with Pence? I’m screwed with him too, since I no longer have my uterus, and he thinks that’s all that I’m good for – bearing babies and overpopulating the earth. That’s all he’s concerned about. Read “The Handmaid’s Tale” by Margaret Atwood for reference.

On Thursday I had my very first psych evaluation test, ordered by a neurologist I met on Monday. It took about six hours to go through everything and I was mentally exhausted. It’s one thing to explain to doctors that I lose my words when I’m speaking and writing (you can’t see it, but sometimes it takes me 7-8 tries to write words that used to come easily to me), so this test was supposed to help pinpoint my deficiencies. From what I could tell I had pretty good picture and spatial cognition, but when it came to actual word gymnastics, I had a really hard time. One really painful portion of the testing was coming up with words that began with a particular letter. I think we did four or five letters total, but I only remember two letters – “A” and “S”. With the letter “S” I came up with about 10-12 words in 60 seconds that had multiple syllables, and with the letter “A” I came up with about 5 words and they were 1 to 2 syllables at most. It felt like the bottom of my mind had dropped out. This is actually what happens now on a regular basis and is one of the reasons that before every phone call I make I get a fair amount of anxiety, even if it’s just to make an appointment.

So after I went through all of that (I won’t get results for at least a few weeks), I got my usual cab ride/medical transport. I’ve been taking pictures of the cabbies and asking them questions and posting everything on Instagram. I asked this particular driver what he thought about the election because he was an immigrant and had only been living here in the U.S. for five years. He said he supported Trump because “Obama hadn’t done everything he promised to since he was elected.” I was absolutely floored. This guy was everything Trump (and all of Trump’s supporters) hated. I feel like his safety is at risk and I don’t want him to find out the hard way. I feel like all of us are at risk.

All of us, that is, unless you are a white guy between the age of 18-70 and you’re telling everyone else that they have to adapt to Trump/Pence and that you’ll be “fine” having your rights and/or access to basics taken away from you. Because, you know, ‘Murica.

Maybe I’ll Go To Stanford After All

Not one but two ladies in my circle (Cara from the podcast In Sickness + In Health  and Kirsten of Chronic Sex) were able to attend the MedX conference at Stanford in September of this year (2016). Kirsten actually presented to attendees and both Cara and Kirsten have chronic conditions that affected their ability to travel and attend comfortably, but they powered through – because they have unique voices as patients to contribute to the perspective of healthcare. MedX operates under the motto of “Everyone Included” and that each person should be valued, while care should be human-centered.

This is a fairly new conference – only five years old – and is technology-based in the broadest sense, because Stanford is doing something that seems so, well, basic. They are inviting patients to the conversation.

I listened to this podcast by Danny Levine, who you may remember interviewed me way back in January regarding my dating life and how being a rare patient played into that. In this podcast he interviews a patient who attended the conference as an “ePatient,” which we find out probably stands for “empowered patient.” After listening to Cara, Kirsten, and now Emma’s stories, I’m motivated more than ever to apply to be included in their audience as an ePatient. I actively blog (and occasionally hop on podcasts and camera), and I’m certainly not too shy to share my story. I’m not sure if they would allow me to present but I would be open to it. I mean, if I can wear t-shirts inviting strangers to ask me about my weird allergies and failed shunt surgeries, I’m pretty sure I can handle the podium. (And this is where my theater training comes in handy!!)

I think something that a lot of us are grateful for (but many don’t know about) is that the conference offers scholarships for both attendance and for travel, both partial and full. For instance, I am not receiving any income this year because my disability case was denied because I didn’t have a diagnosis and the language my doctors are entering on my records isn’t really describing my situation. So now that I’m pulling money from my 401k to live off of – the absolute barest minimum so that I don’t lose it all to penalties and taxes but have enough to pay rent and student loans – I don’t have money for events like MedX, not just for attending the conference but also for flying there and sleeping in a bed. There’s a chance they could take pity on me for seeing 54 doctors and having 10 shunt surgeries and looking like Quasimodo and I could be in Stanford next year, telling a room full of people my story. So I’m gonna try. But my job as an ePatient is that I have to use my medium (blogging) to document my time there – at least three blogs of certain lengths. That’s absolutely no problem. I’m pretty chatty.

I’m a bit worried that like TV programs going for the cute puppy factor, MedX will want someone on stage who already has a happy ending, who won’t seem to be soliciting assistance for an unsolved mystery. Even with my recent MCAS diagnosis I have no idea if I’m there yet.

I’m also worried about traveling that distance by myself. I’ll lose a great deal of my vision from having to be upright for so many hours, plus I’ll be incredibly uncomfortable because I won’t be able to lay down to relieve the pressure and it’s pretty much guaranteed that I’ll develop tremors, so it would be great if I could have someone with me to act as my eyes and carry items as well as open doors. The national hydrocephalus conference was here in Minneapolis this year, and that was incredibly taxing on me, so I know traveling to California will be much harder. Cara is still suffering because of the nature of her chronic illnesses and unfortunately her body may take months to recover.

Why do we want to do it? Because, as patients, we are involved. Rarely do we enter or leave a doctor’s office without doing a ton of research. This conference is tech-heavy and is attended by doctors and researchers and administrative staff just as much as it is patients, and that is a direct reflection of the world we live in when we seek medical care.

At one point, Kirsten spoke up and suggested that the medical staff speak directly to the patient(s) while a presentation was being streamed to the masses online. A conference does not relieve doctors of certain responsibilities such as treating patients as individuals with valid input.

So I’d love to go and make some connections just as Cara and Kirsten and Emma have, and raise my hand and raise some hell if need be. I can think of a few dozen doctors who really need to attend and gain some perspective.