Chronic Illness Bloggers

Have a G’Day Every Day with Oska Pulse

Posted on by akiwifreund

***Scroll to the bottom of this review for an updated offer starting in January 2019! A new, improved Oska Pulse is now available, with a better grip and longer running cycle. Just use my coupon code of SICKDATING.*** And as of March 2020, I used it to take down the inflammation in my chest due to costacondritis – inflammation of the cartilage in my sternum. Boy, if you’ve never had that, it feels like a donkey kick to the heart.

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 10 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 strain on my left shoulder. Four times now I have 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.
Oska_1200x628px_1

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 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, 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 mid-40’s, 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.
Oska_720x300px

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).

Informational: A third-party, independent study showing that Oska Pulse can significantly reduce pain and improve mobility.

And isn’t it great when you can actually see that the Oska Pulse is clinically proven to reduce pain, like it is here in this study? It’s a double-blind clinical trial with a placebo! Super science!

Benefits of ordering a Oska Pulse device:
– Drug free
– No known adverse side effects (but please keep away from medical devices affected by magnets including pacemakers and adjustable shunts)
– Internal battery lasts up to 4 years
– 30-day money back guarantee!

NEW FOR JANUARY 2019:

The NEW Oska Pulse is now available for $399, but you may also use my coupon code of SICKDATING and get $55 off for a total purchase price of $344! Its running time is 90 minutes per session and it will run 20 hours before requiring recharging.

Also new for 2019:
I managed to develop CRPS (Complex Regional Pain Syndrome) in my right hand and wrist. They swell up quite large if I use them at all, even for simple things like grasping a page or two of paper. The Oska Pulse was successful in bringing down the swelling after only two sessions. Although it hasn’t cured my CRPS, I am using my Oska Pulse like crazy to help manage it.

Here is a video explaining and demonstrating the Oska Pulse!
https://www.youtube.com/watch?v=dpo_Bk91InA

Saturday Morning Thoughts About Friday Nights

Posted on by akiwifreund

Last night was a babysitting night for my nephews, ages 11 and 7, while my sister and her husband attended an art opening for a friend. I got permission to initiate them into the world of the musical “Grease” and all of its dirty references with actors who were very obviously not teenagers – the boys immediately picked up that Stockard Channing was “old” (33 when the movie was filmed). The 7-year-old said the actors were “creepy.” But they still got up and excitedly danced along with “Greased Lightning.”

I told my sister that if any questions came up about dirty jokes, she was getting all the queries. I didn’t want to get in trouble for giving them any answers.

Back in 1997 to 2003 I was living in Cincinnati, and during that time I worked in a very large law firm that expanded from 50 people to 350 people by the time I left. If you’ve never worked with lawyers, just know that they can drink. It was a great place for me to be really social. I did a lot of dancing. Sometimes I can’t believe that my Friday nights now are so different from 20 years ago. TWENTY YEARS.

We used to bring our going-out clothes to work on Fridays (if we weren’t already wearing them), and then all pile into the bathroom with our curling irons and hair spray and perfume and body glitter and high heels and makeup. We were a core group of four but sometimes there were more, and we’d rent a hotel room to stay in so we wouldn’t drive home drunk. If there were 8-10 of us, the hotel room would only end up being $10-15 downtown for a decent room, and maybe even a suite with a living room and pull-out couch.

One of the nights that we had a larger group for a friend’s birthday, there were 10 of us total, and four people got two bedrooms, and the rest of us were out in the living room. Two of the girls were doing full body barrel rolls over one of the guys on the floor. Now, let me tell you that I have no idea how we got this guy to party with us, but we did. He was younger and he worked in the mail room next to our area and we built up a good rapport with him, and he was fucking hot. There’s just no other way to say it. He was hot and he had a big, tight body with muscles everywhere, and we all wanted to jump him. So at the end of the night my two friends were rolling around on the floor with him, and I was sure that at some point it was going to be a threesome and I was going to have to pretend to look away. Unfortunately for them, it didn’t happen. A few days later one of them whisper screamed to me that he had the biggest penis she had ever had the pleasure of bumping into and she might have been a little scared if she would have been sober. I was a little sad that no one deflowered the mail room guy. It was some sort of male dance review fantasy.

Every time we went out I managed to play kissy face with some random stranger. I’ve been accused of putting out a scent, but maybe it’s because I just shake my ass when I’m dancing. One time on the dance floor I was minding my own business when a guy who was exactly my height started dancing with me and immediately put his hands on my shoulders and started pressing down really hard. Maybe I was bouncing around too much? He was really drunk and it’s possible he wanted the world to stop spinning. My friends were watching this happen. They said they could see the instant that my face changed from “I’m going to see where this goes” to “Oh, HELL no!” After he succeeded in immobilizing me, he tried to suck my face off with his lips. I couldn’t move my body away from him, only my neck. Back, back, back went my head like a chicken, and his lips kept stretching forward like a cartoon. I finally pried his hands off and climbed over my friends to get to the corner of the booth and he eventually went away after he couldn’t figure out how to find me again.

A bunch of the bars in the Over the Rhine area of downtown Cincinnati change ownership and themes often, but back in the late ’90’s the popular ones were Banana Joe’s (a chain that some of you might remember in other cities) and a ’70’s disco place called “Have a Nice Day Cafe” and one of those light-up disco dance floors. I remember that some dumbass maced someone else on the dance floor and the whole bar had to be evacuated one night, and all of us were teary-eyed and gagging. It was not “nice.”

Banana Joe’s had $1 rail drinks from 5 pm to 9 pm, so we would race from the firm to get there as soon as possible and pound down those drinks before they became full price, and to dance before the floor got packed. I was often the first one on the floor. I can still hear my friend saying, “There go her hips!”

One night in particular we had a bigger group of about 7 meeting up for drinking and dancing, starting early as usual. It included a gay couple and it was on a chilly night; we were all partying on the cheap and there wasn’t a coat check, so we just piled our coats in the corner by the DJ booth and danced near it, per the usual. On that night, though, there was a guy who was coming up to all of the girls and humping all of us in a distasteful way and wouldn’t take no for an answer, so we were throwing him dirty looks and edging away from him – and further away from our coats.

Dumb move. Not much time lapsed when one of the guys noticed that the nice $700 leather coats he and his boyfriend owned had been stolen by the obnoxious guy. We looked at the front door and the guy was on his way out. We girls were pissed! We shot out the door and yelled at the doorman to ask which way the asshole went, then we split up – two one way, two another. We circled the building, running to catch up, and by the time I did with the person I had paired up with, the other two girls had already pounced on the loser and retrieved the two jackets. They had seen him slinging them into a dumpster when he was taking off down an alley. They were yelling at him and he was holding up his hands as if he didn’t know what they were screaming about, then he slinked off into the shadows. We celebrated a little the fact that we kicked ass while the boys waited inside to see if they would ever get their jackets back.

I think about my Friday nights now, when I have a few hours with my nephews, or when I am looking for some diversion on Netflix or Hulu or Amazon. I’m so glad that I embraced every opportunity to be social, that I chased after an asshole who stole my friends’ coats and nothing bad really came of it, and that all of us survived the Friday nights.

I realized, just this moment, that every generation thinks that they are the ones that discovered wild. That’s not true at all. My nephews are going to figure that out too. They have no idea what their parents did or what I did because they think of us as the adults that are pretty quiet on Friday nights.

Can You Repeat That?

Posted on by akiwifreund

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.

Gold, Frankincense, Myrrh, and Brain Damage

Posted on by akiwifreund

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 _____?”

.

 

New News

Posted on by akiwifreund

First and foremost, my friend Nicole (Nikki) Seefeldt finally got her lungs on December 2nd after a very long listing. Hers was the very first blog that I followed here on WordPress, and she suffers from not one, but two, rare diseases. Her listing for new lungs was much longer than she anticipated but she did not let that deter her from staying on course with her exercising to make sure that her recovery got off to the best start possible. Please, if you have no medical reason that your tissue or organs would be rejected, sign up to be a donor. All of my friends who have been organ recipients are eternally grateful.

Please check out her blog and progress here: As I Live & Breathe

Second, I was considering traveling to Washington D.C. in February to participate in their Rare Disease Week to learn how to effectively communicate with lawmakers. I applied for a travel grant and was participating in a large conference call where we were going over the details of the week and what would be awarded if we got the nod on our travel scholarships when the woman running the call received a notification that the Senate passed the bill for the 21st Century Cures. A week prior the bill had passed through the House. While we were on the call, she had started crying and then had to explain that it had taken two years to get the bill to pass – and with very little resistance from either major political party. The bill passed in the Senate with only five opposed. She then stated that President Obama indicated that if the House and the Senate passed the bill, he would absolutely sign the bill into law, with no hesitation.

Global Genes has published an article and hosted a podcast with me as a guest in the past. They are also the major partner in the rare disease week in February in D.C. that I may or may not attend – I may not be able to handle the grueling travel and having to be upright. But they have been fantastic about getting the word out about this bill and about keeping all of us connected in the rare disease world.

A lot of rare diseases are diagnosed during childhood, as is what happened with Nikki. However, I have rare diseases that haven’t been recognized until adulthood, and even one that we’re still not sure of. Some children don’t survive to adulthood. All of us have a better chance at a quality life if we have medications and treatments that don’t require a decade of testing before they are approved. There is no reason for us to stop advancing science to find answers. We will never run out of discoveries.  

No. Oh, Wait…Oh, That’s a Definite No.

Posted on by akiwifreund

Of course it’s been a while since I’ve logged on to OKCupid, but there are some guys who don’t pay attention to that and just like my pictures or check out my profile without looking at the last time I’ve logged in. I will admit that even I’ve been excited about a profile and then noticed too late that it’s been a month or three since the guy has logged in, signaling either 1) He found someone, or 2) He gave up, or 3) He’s in jail. I got a little notification in my email with a note from the guy saying, “I do have a German shepherd and a Siamese – otherwise I’m clean- list-wise”

I’ve heard this before. I logged in. We were a whopping 43% of a match. I looked over his profile, and the very first thing I saw is that he’s Christian, and it’s somewhat important. What did I specify in my profile? I won’t date someone who participates in organized religion. Why not? Because I’m not waiting to be saved or led or subjugated. I can lead a morally upright life without religion. I can lead a spiritually aware life without religion.

Some other tidbits from his profile: He admits he drinks regularly (at least 4-5 nights a week), he really, really wants to fuck anything that moves, and he’s a Dom. A little more from his questions: He doesn’t want women to have “too high self-esteem; he wants to date a slut; he would prefer to date only in his race; jealousy is healthy; he could be in an open relationship; he’s just looking for sex for the next few months.”

I started with the easiest one, and replied that we wouldn’t be a match because he has listed himself as a Christian and that it’s important to him.

His response: Really? I’m a barely attending Lutheran with doubts. And what is with intolerant people on all sides of the spectrum- Good luck with your godless utopia
Me: Since your profile says that you’re Christian and you’re getting pissy that I pointed it out, I’d say it’s pretty important to you. And since you’re offended that I don’t believe in organized religion, I’d say we’re not a match.

I didn’t even have to take it any further than that because he blocked me and so I blocked him (sometimes these jackwads come back later when they are drunk and looking for spank bank material). But really, he’s “questioning” his faith because he really, really wants to fuck around and he doesn’t want to feel guilty about it. It was such a weak insult to throw at me – “godless utopia”??? That’s only a horror to someone who believes it’s the worst kind of hell a soul can suffer. If he wasn’t strong in his faith, he wouldn’t have written it. I guarantee you he’s still trying to work out how to give himself blow jobs.

This is a Test

Posted on by akiwifreund

Another chronic illness blogger has been kind enough to let a bunch of us tell our stories on her site, and late last week my most up-to-date info was included. She has indicated that she may discontinue the series if she no longer has parties interested in being part of the project, but there are so many of us out there that I would be surprised if the well ever dried up.

From This Point. Forward.

Today was a really big day in my little alien world. I finally got the upright MRI that I’ve been asking for for 6.5 years. In all of the 56 doctors that I’ve seen, it has only been the most recent neurologist who hasn’t fought me on my request and put the order in.

So I got strapped into a chair and a cage was lowered over my head and screwed into place like I was Hannibal Lector. Like I was ready for some football and to call out some huts! I was sandwiched and squished between two huge, white panels, a bar propped between the panels for my hands and then one lower for feet to rest on to make my very own roller coaster ride more comfortable.

A couple of times the tech buzzed in and said, “I’m picking up movement. Try to keep very still.” I had explained to her that I sometimes have trouble with tremors in my neck when we were going over the questionnaire, but maybe she’s heard that line before and doesn’t think it’s important to remember. I breathe with my diaphragm, so at a break between segments, I moved my arms as far away from my torso as far as the sandwich bread slices would allow me – that way there was less of a chance that my smushed arms would move my head when I breathed.

The tech had given me the option of tilting the chair back at 30-45 degrees, but I explained that it would compromise what we are trying to catch on imaging, so I had to stay completely upright. The MRI takes about 40-45 minutes, and to make sure the pressure in my skull was really high, I exercised my arms for about five minutes both before the cab picked me up, and then again when I changed my clothes. All I have to do is mimic the bicycle motion with my arms like what I do in PT and I nearly go completely blind from the pressure in my skull. This is why I can’t exercise. I would probably give myself seizures.

At the end of it when I was extricated from the face trap/sandwich boards, I got up to walk and ended up stumbling around like a cat coming off of anesthesia. I had to have a lot of assistance to walk back to the room where my cane was waiting for me. I might have said, “No, I don’t need a fucking walker.” This scan had better not let me down.

The Ballad of the Broken Neighbors

Posted on by akiwifreund

“FUCK. FUCK FUCK FUCK FUCK! SHUT UP! JUST SHUT UP! FUCK YOU!”

It first came on Sunday night, a man’s voice, from the direction of my windows to my right. I had my ear buds in and had been laying in bed, watching movies, as usual. My first thought was that a guy was watching a sporting event and was just generally being a dick and being really passionate about a goal that was scored.

But then I heard a much softer female tone answer. I could tell she was in tears but I couldn’t make out what she said. Then he again exploded: “FUCK YOU! FUCK YOU! SHUT UP! SHUT THE FUCK UP!” Then he punched something, hard, multiple times. It may have been the wall, or it may have been a piece of furniture, but I don’t think it was her. I couldn’t tell where it was coming from. I got out of bed. This building is old, built somewhere around 1910, and the floors are the original wood. They creak with every step I take no matter how quiet I try to be.

I went to the kitchen, and it seemed to be slightly louder. I could hear them both. I have a very tiny apartment, only 360 square feet, and much of the wall space is covered with art, so it was really difficult for me to find any blank wall to put my ear to. By the time I did, they had stopped. I hovered for a while but everything stayed quiet. I slowly walked back to bed, wondering if they were truly done.

At around 12:30 a.m., there was another outburst. “FUCK! FUCK YOU! STOP IT! JUST STOP IT! JUST SHUT UP! SHUT THE FUCK UP! FUCK FUCK FUCK FUCK FUCK!” More crying from her, and words, but I still couldn’t hear what she was saying. I got up and they stopped. I got into bed again and wondered when they moved in, because I hadn’t heard anything like it before from that space below me.

At around 9:00 the next morning, the yelling started again. I got out of bed and laid down on my floor so I could put my ear to the floor boards. I could hear them walking around, I could hear the air moving between their bodies and their ceiling/my floor, I could even hear them making holes somewhere close to me – maybe to hang electronics, or pictures? I felt like I was in a movie, where the cinematographer shows how close one character is to the other, and all that is separating them is one flimsy piece of board. I wondered if they could hear me breathing. I tried to hold my breath.

I heard him say, “Why do you always fucking do this?!” and I know that she answered because I heard her voice, but it was still too quiet and tearful to make out the words. Then it was silent except for their bodies moving, and the periodic pounding into the plaster. After about 15 minutes I got up from my place on the floor because it was becoming far too painful to maintain, and I started getting ready for my caseworker to visit. As soon as I did, the yelling started again.

When my caseworker arrived at around 1:30 p.m., I warned her that the couple in the apartment below mine had been fighting, and she would likely hear it. About three minutes later, we heard the guy again, just as loudly as all of his other rants. He never seemed to tire. I imagined that the woman was exhausted.

His rage continued for a total of 15 hours on Monday. He hit something again too. I still don’t think it was her, but it set me on edge. The last screaming rant was around 12:30 a.m. again; I had my ear buds in watching my final movie of the night trying to get tired enough to sleep and his screaming penetrated the ear buds.

For the next two days, Tuesday and Wednesday, he had screaming fits again, but not for the 15 hours that he did on Monday. On Wednesday I typed up a text to forward to the property manager but at the last second deleted it. Then an hour later, a notice was slipped under my door saying that we were getting completely new apartment managers (our 7th and 8th in a year and a half), and to be patient during the transition. That’s why my instincts wouldn’t allow me to text the now-fired old manager!

Today at lunch I took a chance and stopped by the office, which is located directly across from the new tenants’ apartment. I pulled the door shut, introduced myself, and told the new managers that I heard abusive behavior from the male tenant of the two. The new managers said that maybe the guy was just watching a game or playing XBox. I said that was bullshit, and that the woman had been crying. Then one of the managers said that yes, she had seen the woman crying. Then they said they didn’t see any marks on the woman’s face. I told them that didn’t mean anything, and by the way, women don’t cry over scores that men get while playing XBox. They said that I could always call the cops if I needed to. I am fine with that – and I will, do not doubt that – but here’s my problem: I have to actually do things to get ready to get to the front door to let the cops in that people who are able-bodied don’t think twice about. We have a secured front door without an intercom. Plus I am the only apartment within close proximity of the asshole, they don’t touch walls with anyone else (even though my next door neighbor heard him shout once), so when I report him, he’s going to come after me.

The new managers assured me they would talk to the new tenants. I went back to my apartment and laid down, and then someone started banging on my door and buzzing the ancient doorbell. I had to say “Just a minute!” more than a few times to get them to stop. After putting my wig back on, I opened the door to discover one of the managers there; she apologized and said she should have called instead of knocked, but then said that the woman said the man was playing with his XBox. I told the manager that that was absolute bullshit. The manager said that if I felt like the new neighbor was disturbing the peace, I was certainly welcome to call the cops, but she had to accept what the woman told her. I asked her if the woman came up with the XBox explanation on her own, or if the manager gave her that option as a possible “out,” and she couldn’t tell me.

So at this point, it’s me against the neighbors. Why do women stay? They just want the abuse to stop. They want their men to value them and to see how much they love them. They want their love to be enough to fix them. They don’t want to get their men in trouble. They need their men for financial support. I run the risk of both of them turning against me when I pick up the phone.

You had better believe I’m going to call it in.

Product Review: TMedPharma (3 Products)

Posted on by akiwifreund

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!
2016-10-23-06-14-21
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

Posted on by akiwifreund

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.

2016-10-23-06-16-10

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.