Save The Date

Statistically, Minnesota is one of the worst or the worst state in the U.S. when it comes to wait times for disability processing. I didn’t know this when I relocated from Arizona to Minnesota to try to figure out what was going on with my body. This article from the Minneapolis Star Tribune states the average wait time is around 570 days from filing to have a judicial review. I just got confirmation that my hearing is set for March 28th, which will put me at about 770 days of filing the appeal (and almost 3 years to the day of filing the initial claim of disability). The back log just keeps getting worse.

I’m not sure I would have done this any other way. As horrible as it has been with trying to get doctors to take care of me in Minnesota, I did finally get three diagnoses that I have been missing for years in addition to what I already knew. I forget what my count was when I entered the state, but I’ve seen 64 doctors since July of 2010. This has not been an easy process. There is no clear path.

Thankfully my allergist has already agreed to fill out paperwork for my hearing, and my counselor has as well. I will be meeting with my primary care doctor and pain doctor next month to ask the same from them. I’ve been rejected by every neurologist and neurosurgeon in the area as well as banned in writing by the Mayo, and I can’t go out of state because I’m on Medicaid so it’s not allowed, so I’m not quite sure how that is going to be looked upon by the judge. There’s absolutely nothing I can do about that.

One incredible resource I wish I had stumbled upon before I started this process but am eternally grateful for is the blog How To Get On. There are sooooooooo many links/ideas/resources/testimonials that it sometimes boggles my mind, and I really can’t imagine how many man hours it took her to put it together. It’s unfortunate that the author sometimes gets reported and blocked by Facebook for either posting “too much” (seriously??) or for questionable posts (again – say what??), so we have to keep it circulating so as many people as possible benefit from its content.

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Oska Pulse Holiday Sale

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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.

I was watching a recent Family Feud episode, and I remember one of the questions was, “Name five items you frequently find on your bedside table or night stand.” I looked over at mine to compare my list to what was popping up on the screen, and a few things checked off: water? Yes. Unscented lotion for winter-chapped hands? Yes. Prescription medications? Yes.

But one thing was missing. This is something I use daily, and I can’t imagine going without it: my Oska Pulse. The Oska Pulse is a battery-operated, rechargeable device that gives off a pulsed, electromagnetic field to treat pain and edema. It’s completely pain-free; in fact, I sometimes have to look at it to make sure it’s still “going” because I don’t feel any sensation while it’s working. But it’s working, and it works! That’s why I keep it next to my bed along with my other staples.

I use it most often on my shoulders. I have had to stay in bed for the majority of seven and a half years now, with some breaks, but damage has been done to those joints because of having to lay in certain positions for long periods of time as a result of repeat surgeries. I have torn tendons and capsules that can’t be surgically repaired. My body’s proclivity to overproduce scar tissue internally after surgery only adds to the problem.

The Oska Pulse to the rescue! While I’m laying down, I just prop the Oska Pulse on a shoulder, press the button, and let it go to work while I watch some shows (or type up some thoughts for my blog). The Oska Pulse emits a blue light at a slow, flickering pace, but that is the only indication that I have that it’s chipping away at the inflammation in my shoulder and arm – it doesn’t vibrate or heat up at all. After 30 minutes the unit will chirp 3 times and then shut itself off automatically. When I remove it, even after one session I will test my arm and immediately have greater range of motion than when I started.
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Just as an experiment, I let my sister borrow my Oska Pulse too. She chose to only use it for her neck, and she noticed that she had a much better range of motion and less pain. After a week, though, I begged to get it back from her – I really couldn’t stand to have it gone much longer than that. And now that I have been using it for about 10 months at this point I really can’t imagine having to go without it.

The manufacturers of the Oska Pulse recommend using it at least 4-6 times daily in each trouble spot for the first week, and then tapering down as needed in order to get the best benefits. They do offer a 30-day money back guarantee. I strongly suggest using the Oska Pulse as much as possible before you decide to send it back within those 30 days, because I think that you will find that you feel the benefits as much as I (and my sister!) did and do.

Here’s the really great part: Between Friday, December 15 and Sunday, December 31, 2017, the manufacturer has reduced the price to $299! This is a discount of over $100 off the regular price, just in time for the holidays.

If you are a chronic pain patient and your support circle is wondering what to get you for the holidays, the Oska Pulse would be the perfect thing to bump to the top of your list!
Oska Pulse

A Slap And A Poke

It’s crazy being me. I say this so many times. I had mentioned the rare disease in my regular every other Tuesday get-together (most everyone has heard about it at some point), and a new guy had it in his head that he was going to school me on how he was going to cure me with diet and a holistic doc. He had the usual probiotic and chelation recommendations but also insisted I should eat sauerkraut. He couldn’t believe that said sauerkraut would instantly release histamines and give me hives. He also couldn’t believe that the Mayo would turn me down. I told him that I don’t ask for advice because I am always 1-7 years ahead of anything anyone can ever tell me, and I’ve never met anyone with my particular neurological symptoms with the mast cell disease.

<sigh>

On Monday, I was supposed to get a high volume lumbar puncture. That was the way it was ordered. This meant that the opening pressure was supposed to be read AND fluid was supposed to be taken off. When I was in the fluoroscopy room, I asked the radiologists and staff if they could carefully document everything before and after because my symptoms would change. They then offered to have a physical therapist evaluate me. I said great, yes, no one has ever offered that to me so I didn’t know it was an option. So they called the doctor to see if he would change the order.

However, when they got the doc on the phone, he changed the order and said forget it, only get the pressure reading and don’t take any fluid off at all. I was floored. First he wanted at least four vials (which is a lot), and then he wanted nothing?? I said that even if the opening pressure was normal, if they took some off, they would still see an improvement in my symptoms for a few hours. The doc said no way. Do not take any fluid off.

The radiologist hung up with him. He told me that he couldn’t go against this new directive and I had two choices: go ahead and get the pressure reading only, or stop everything and come back some other time. But here’s the thing: I only got this lumbar puncture because I called this neurosurgeon that I saw two years ago and begged for it, because I haven’t had my pressure checked since then. My current neurologist has been telling me I’m overdraining (even though no one has checked me) and I’ve been saying that the pressure in my head is high when I’m upright, and I felt like getting this check would help settle the fight. But the neurosurgeon wouldn’t agree to see me in the office. This was all I was going to get. So I went ahead.

I don’t metabolize Lidocain properly, so even though the radiologist juiced me up liberally, it wasn’t enough. It was also tough for him to penetrate my dura – possibly because of the sclerosing issue caused by my high histamine levels. After all of that pain my opening pressure came up as a boring normal level. Nothing to see here, folks. Except it completely rules out what my neurologist is saying about my shunt overdraining. My guess about why it’s not giving me a high reading is that the pressure lowers when I’m flat. There’s only been a couple of times when I’ve had high readings and I’ve been flat.

On Monday night, I ate some homemade spaghetti sauce and woke up the next morning to find that my entire mouth had swelled up, and the lining had sloughed off. I also had sores all over the inside. So tomatoes are now a big no-no. That’s a bummer because I make killer chili and lasagna.

Also kind of new in the past few weeks is another diagnosis. I’ve been struggling with this for at least the last 7 years as well. Doctors were telling me that I must be doing something wrong, blah blah blah. It’s super painful. I have hidradenitis suppurativa. I’ve had it come up in two different areas not close to each other and had to have “surgical intervention,” which makes it officially grade II. I’ll be seeing a new doctor Monday to talk about injections; it’s controlled by a medication that is similar to Imuran, which I was on in the past. The crazy thing is, I saw a very extreme case of it a month prior on a British show on Netflix called “Embarrassing Bodies” but had no idea that it was the same as what I had brewing. (Let me tell you, if you are fascinated by all things medical, that’s a good one to watch.)

Send Up The Flares

It has been a really long time since I’ve logged into my FetLife profile. I didn’t realize it, but I had three messages waiting for me – one from about two months ago, another from four months ago, and the third from a full year prior. The one from a year ago I let slide. I mean, I did put in my profile that I don’t log on and that I’m going through a health crisis, and I can’t “play” in any way, shape or form. I did make a small adjustment to my profile, which alerted my friends and RELEASED THE KRACKEN.

One former spank party friend wished me well and told me that he had heard I moved to California. I replied that that wasn’t the case, I’m actually in Minnesota, taking care of some serious stuff. Then the guy who sent me a message four months ago hit me up again, this time with his instant message name and phone number. I replied that I was not looking to do ANYTHING, but that didn’t deter him; he said he would be willing to “give me a massage if I needed it.” Um, right, do bedridden women usually fall for that?

Then another guy whom I’ve played with at spank parties in Arizona hit me up to let me know he was actually currently in my city for work, and was I interested in getting together for a session? I groaned. This guy…he’s very, very, VERY focused on his kink. I like to have fun. It’s not the be-all, end-all thing for me. He carries a backpack with all of his tools. He actually has two pictures of me (not showing my face, only my red ass) on his profile. He’s totally into role playing, having me stand in the corner, punishment, the whole bit.

So I turned him down, because there is no fucking way I can do anything, including hang upside down, or put my stomach over his knees. The thought makes me cringe. I would be walking like a cat just getting out of anesthesia. And it would be painful, and not in a good way. So he asked me if I could be his chat buddy while he’s traveling for work: talk to him about discipline, spanking, corner time, paddling, etc. I’m rolling this around in my head, and first of all, this requires research. And time. And creativity. Probably some motherfucking Skype. A hairbrush (because wouldn’t you know it, I’m bald). It’s all I can do to peel myself out of bed to make food for dinner every day, and this guy wants me to put a lot of effort into keeping him happy and satisfied.

It takes a lot of effort to turn him down and I know I’m going to have to repeat myself. It’s not my first time. And there it is: “I’m traveling a lot and I don’t get the opportunity to do what I need to do.” So I have to drive it home for him: I’ve got serious stuff going on, I’ve got scar tissue in my brain and I have to lay flat 20-22 hours every day, I’m in pain, I can’t get another operation right now. His reply: “Okay, just know that you’re missed.” BTW, he has a wife and two little children at home. She knows about his kink and his attendance at the spank parties; I don’t know what else she knows because the travel job is news to me – but then again, we were never close.

This is also not the first time I’ve had to turn him down since I started having shunt failures. His kink always comes first. It’s fucking exhausting, man. But if y’all are interested in a pen pal, hit me up.

In other news, for about three weeks I’ve been dealing with persistent hives on a daily basis. I wasn’t quite sure what to do because of losing my rare disease doctor. However, I received a message from him this morning indicating that he put a script through to the compounding pharmacy for me that will (hopefully) help with my hives as a sort of last hurrah while I try to find another doctor. I also got the names of two doctors in the area who would be willing to communicate with him. The problem is that one is old as dirt and so probably won’t be practicing much longer, and the other one isn’t much younger and has a bad reputation for being a raging bitch. I need to sacrifice a chicken and do a dance around a fire or something.

Also today, I received a call back from the neurosurgeon’s office whom I originally saw two years ago when I relocated here from Phoenix. I called him as a last-ditch effort to try to be seen by him or someone else in the practice and get away from my current neurologist. She has been telling me that I don’t understand my symptoms – kind of along the same lines of telling me that even though I stubbed my toe, it’s really my nose that is hurting, ridiculous like that. So this neurosurgeon was kind enough to order a repeat lumbar puncture, which I’ve been begging for since December 2016. The lumbar puncture he ordered is “high volume,” meaning they will take at least four vials of cerebrospinal fluid. They will measure the opening pressure (like you would when you check the pressure on your vehicle’s tires) and then they will send the vials of fluid for testing of the proteins and check for bacteria. Getting this done will also relieve my symptoms for a few hours. He also agreed with me on my choice of neurologists within his group. 

My current neurologist’s justification for not ordering a current LP is this: Usually slit ventricles means that you are overdraining. I pointed out to her that my shunt failed 17 days after surgery in 2015 so I’ve got high pressure, and she witnessed my shunt opening up for about 30 seconds during my last appointment, and my paralysis went away, then came back. Then we read scientific journal articles together about adults with slit ventricles and shunt failures and symptoms. Then she said it only happened to some adults. I asked her why I couldn’t be included in that “some.” She told me it didn’t count because I wasn’t throwing up, I was only nauseated.

Fuck that. Spinal tap, here I come. 

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Gender Bias: It’s Not Just for Work

Everyone is going crazy for this article that was published about a man and his subordinate who swapped names as an experiment to show gender bias in the workplace. Really, it’s not so much an article as it is a series of tweets, but you get the full picture. And REALLY really, if you’re a woman and you’ve worked outside of the home or if you’re a woman and you’ve been outside of your front door, you know how this went.

We Swapped Names and I Was So Surprised (Said Every Male)

But if you know anything about my blog or about me, I write about my experiences as a woman in the American healthcare system. Now I’m a really concerned woman as I watch a very out-of-touch bunch of Republican-led lawmakers work on dismantling the social safety nets that will help keep me housed and fed as a disabled adult with no chance of working (at least, not now, for as long as I’m allergic to the shunts they keep putting in me).

A huge barrier to my care is the fact that I’ve seen 57 doctors in 6.5 years, and a good number of them have told me to go away and not come back. My disease and symptoms scare them. They can’t diagnose me. I can tell them exactly what’s happening with my body, but they don’t believe me – they tell me it’s not possible, even when I demonstrate it and they see it with their own eyes.

I was told by someone close to me – a man – that I probably wasn’t doing something right. I wasn’t advocating enough. I wasn’t demanding enough. I wasn’t yelling enough. I wasn’t stoic enough. I was probably too emotional, or not enough, or not the right combo. I was just the wrong kind of patient and it was hurting my case.

By the time you get to 57 doctors in 6.5 years, you learn a lot of tactics: cajoling, crying, stoicism, joking, demanding, taking binders of info (so they can’t claim that they don’t have enough of your info at hand to continue).

My conclusion is that I just don’t have a penis. I wouldn’t be doubted. I wouldn’t be treated as if I’m being over-dramatic or like I can’t handle four-syllable words.

I always invite someone who has told me that I’m not doing enough to come with me. Of course that person suddenly becomes too busy to join me…but not too busy to dispense advice from his armchair.

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.

How Much Do I Owe The Swear Jar This Time?

A couple of weeks ago I got the last of my fillings repaired as part of the bigger, year-long, multiple visits to the dentist that were caused by me clamping my jaw in my sleep because of the pain in my shoulder and abdomen. I also had to make sure that they marked in my chart that I had slit ventricle syndrome and the tumor because they love to tip me waaaaaaaaay back in the chair and it really messes with the pressure in my head.

There was a mixup with my appointment and they got me back much later than my start time, which caused me to have to call my transportation to pick me up later; unfortunately, transportation had to leave me until 2 hours after I was done, which caused the fluid to build up a lot, which means I was hella uncomfortable and my vision was cut down quite a bit. But before that, I had a weird/comical/maddening exchange with the staff in the back.

I require four times the amount of numbing medication because my sodium channels don’t process pain meds correctly. Both of the teeth we worked on were in my upper jaw, so I ended up being numb up to my forehead. When they sat me up after I was patched up, they told me I could walk to Walmart down the road (as if! No way am I giving them my money!). I said no. They said I could then walk somewhere else. I again said no. They asked me why. In the best way I could with a very numb tongue/lips, I said, “I can’t theecuz oth wuth wrong with ny vrane.” The assistant, who was none too bright, said, “WHAT’S WRONG WITH YOUR VEINS??” I said, “No. Ny vrane. Vrane.” And I pointed at my head. The assistant dentist asked what was wrong, and I said, “I can’t do anyfing vat vill nake ny vlood mressure go umph. I cood have a stroke and nigh.” The assistant dentist asked what the doctors were doing to help. I said, “I can’t fine anyvun who vill take ny case. I’n lergic to da shuns. I need to fine stuff I wone vee lergic to.”

Then the dental assistant piped up and said, “Well, I don’t blame the doctors. I’m sure they don’t want to feel bad if it doesn’t work out for you.”

I shot her a look and said, “I cood die wifout helf. Da pressoo keefs goin’ uf in ny head and if I can’t get sunfing in to work, it vill kill nee.”

Without hesitating, she said cheerfully, “Well, I can see both sides.” Like we’re debating whether to have fish or chicken, instead of whether or not it’s better to kick the bucket to spare doctors’ feelings. She stuck with her “too bad for you” attitude.

At the end of December, my case was referred to the top neurosurgeon in the Minneapolis/St. Paul area after it was discovered that my brain had literally collapsed under the pressure, as well as started growing a tumor from the scar tissue that was left in from a previous shunt that is now about the size of a quarter. I know he got the radiology report that listed all of my symptoms. I know he got the impressions from the neurologist because he seemed to answer her question about whether I’m overdraining.

His reply was that my brain was fine and the tumor was no big deal. He also said the shunt isn’t overdraining. Now I’m not allowed to see him either. 

Here’s the deal: I know I’m not overdraining. If I were, I wouldn’t have high opening pressures every time they do a lumbar puncture. The overdraining assumption is strictly my new neurologist’s misunderstanding of slit ventricle syndrome – she’s trying to make my symptoms fit, instead of paying attention to what’s going on. Second, the brain tissue around the shunt and the tumor is turning to jelly. This isn’t normal and it’s a big deal. Third, the tumor is causing measurable cognitive damage. Fourth, and I’ll show you pictures, but my ventricles disappeared, and my brain has literally collapsed.

mymriscreenshots

I have new insurance that started on February 1st that comes with an advocate and a care coordinator, so I’m waiting for them to contact me, which is the norm. I smell a lot of research in my future for trying to figure out what I can try for the next shunt system, and I’m not looking forward to it, but I also know no one else will do it but me.

Can You Repeat That?

The last couple of weeks of December were a revelation.

I spent 20 years away from my family over the holidays, and I learned very early not to make a big deal out of the days we had off in November and December. When I’ve had serious boyfriends and we’ve lived close to their parents or grandparents, I’ve ended up at their houses, but if not, I’ve stayed at home and cooked whatever I’ve wanted to eat and overloaded on movies. A few times I’ve gone to friends’ houses – and one time that I did that, bringing my most recent ex with me, is a story still told today. My friend’s mom introduced us as, “Hi everybody, this is Chelsea, and this is ______, and they used to be boyfriend and girlfriend, and now they’re not, so I don’t know.” This was about 18 years ago, and when I reminded my friend, she started reminding her mother, and her mother finished the story, so yeah, it’s still fresh in her memory.

This holiday season really felt like a roller coaster. I received the results from the upright MRI. Just a few days after that, I received some medical records from a doctor I had seen one time for 20 minutes in August of 2015 when I was trying to find a primary care doctor who would take me on as a patient. I remember this one visit because the doctor had been so friendly, but I knew she was struggling with understanding the complexity of my conditions, and I had to repeat some information. I carried my previous records with me but she wasn’t interested in looking at them, she just wanted me to tell her again.

I was relieved at the end of the visit because it seemed like she was willing to take on the basic care like ordering my thyroid and cholesterol labs for my Hashimoto’s stuff. But then a week later I received a call stating that I had to find a new primary care doctor because she left the practice – she received notification that she passed an exam for a different field. I was floored. If you’re anticipating leaving, why take on new patients??

But the real kicker is getting her notes from that 20-minute visit now. Because I had to repeat myself, she wrote that I was “bragging” about my surgeries, and that I had Munchausen’s.

It’s really hard to read that in the same week that I received results saying that my brain has literally collapsed and I have tissue growing like a tumor and doing damage to my memory and speech. (Today I couldn’t remember why I called the county regarding picking out a vendor for medical assistance.) I still have a hard time talking about what’s going on, to get the words out. It’s serious. What’s happening is that the pressure in my cranium keeps rising, and it’s going to keep rising until it’s the same pressure as my blood pressure and I have a massive stroke and die. The two methods they have of treating it don’t work for me. First, the medication to reduce the CSF production has been proven not to make any difference for me. It’s been tried multiple times. Second, implanting another shunt isn’t going to work; I’m allergic to them all. I’m now at the point where I clog them and strangle them within days. I simply don’t have options at this point.

I also just got notes from a neurosurgeon from the University of Minnesota that I saw a year ago, from one of the guys I have nicknamed the Three Stooges. He was one of the three doctors who saw my MRI from July 2015 that had the beginnings of the slit ventricle syndrome and a smaller version of the tumor, and observed my fatigue, vertigo, facial droop, unsteady gait, and resolution of some of the symptoms when I tilted my head to move the fluid around. In my file he wrote that I “walk with a cane and can’t perform a tandem walk” but that I’m “fine.” He also stated that if anything changed, they would welcome me back to the neurosurgery department.

Fuck that. He’s not going anywhere near my brain when I’m unconscious. He obviously can’t handle it.

But the one bright light in all of this swamp of shit was that on December 27th, I received a voice mail from a case worker with the State of Minnesota. She simply stated her name and said that she approved my case for disability. As soon as I heard it, I immediately burst into tears. Being approved by the state doesn’t mean that I receive any kind of financial compensation, but it does assist me when I’m applying for housing – I can officially state that I’m disabled – and I also qualify for medical assistance as a disabled person instead of just a person living at or below poverty. It will also help to make my case stronger when it comes time for my hearing with the federal case, which I still don’t have a date for yet. My attorney thinks it’s still “some months” away.

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.