rare disease

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.  

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!
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Two capsules of Sentra PM should be taken at bedtime to promote restful sleep. I have a terrible time falling asleep and I haven’t used an actual prescription medication like Ambien for at least 13 years because of the terrible side effects (no, no getting up in the middle of the night and eating a gallon of ice cream or going to the bathroom in my clothes closet), because the morning after I would be a walking zombie, barely able to brush my teeth (sorry, former co-workers).

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

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

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

To Put Into Words

Posted on by akiwifreund

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This Will Help You To Be Curvy In All The Right Places (“Posture Pump” Sponsored Post)

Posted on by akiwifreund

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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Three decades ago, my classmates would endlessly remark upon my excellent posture. I was attending a high school for the arts (think “Fame!”) and my art area was theater, but of course like most students there, I dabbled in multiple areas, so I picked up some things from dancing. Even when we sat on the floor of our black box theater in a circle I wouldn’t slouch. I wanted to have a strong back.

Boy, I miss those days. I’m 42 years old now, and I’ve spent the last six years in bed because of a mystery problem with my cerebrospinal fluid that is made worse when I sit upright. Laying in bed has weakened my core muscles and changed the natural curvature of both my cervical (neck) and lumbar (lower back) spine so my spine doesn’t have the “S” shape it should. For the most part I lay flat but I elevate my head slightly so that I can see my keyboard of my laptop, which is propped up on my stomach by a tilted laptop cooler.

For the last twenty years I’ve worked in some capacity in the technical field thanks to a boyfriend getting me interested in computers fairly early in my adulthood. Strangely enough, the posture of the techie and the posture that I find myself in when I am on bed rest are very similar: It’s an annoying “tech neck.” People in the technical field, and in fact, people who are stuck in front of a computer for 8+ hours a day end up in the same pose: shoulders slouched, head thrust forward, neck vertebrae compacted and misaligned.

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Now that I’m pointing it out, you might even be shifting around in your seat to correct your posture, or noticing it more in the people around you, like pedestrians crossing the street who won’t even look up from their smart phones. Yep – there’s the “tech neck.”

How about a visual?

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Even the slightest tilt of the head forward puts tremendous strain on the neck muscles and bones. Rather than adjusting the screen to a higher elevation, we tend to alter the position of our heads so that we are constantly in a hunched-over position – and we wonder why we have so many headaches!

But now that there’s been years of damage done, sitting up straight isn’t going to cure the numbness and tingling in your arms and fingers, or the stiffness in your neck. Of course, do sit up straight, and do take up your company’s offer to bring in someone who is trained in proper ergonomics for adjustments to your desk, but in the meantime (and for the long run), this product can offer you immediate relief. Sometimes it takes a village, right?

There is a family of products available through the Posture Pump® company for back and neck problems that addresses multiple issues, and the Posture Pump® Dual Disc Hydrator® (Model 1400-D) is going to save my neck.

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I already have spondylosis, which is a very technical and general way of saying that I have degeneration of the spine, and stenosis, which is a narrowing of the canal where the spinal cord passes through the vertebrae. I’ve got pain and stiffness, and my arms are tingling and spontaneously going numb because of the degeneration and narrowing happening in my neck.

Here’s a video on the Posture Pump® Dual Disc Hydrator® (Model 1400-D) and you can easily see how it works and how it can help you.  Click on the link below.

Click here:  https://www.youtube.com/watch?v=l6mjIKA_nDo&feature=youtu.be

To summarize, there are two air chambers that work on the neck and upper back area to realign the vertebrae to the natural “S” curve and relieve the pressure from the “tech neck” we have unwittingly positioned ourselves into. Ultimately the neck then benefits by being able to get nutrients and hydration to the discs in the spine, and range of motion improves. And headaches? What headaches? Wouldn’t it be nice to send those packing? You just need to lie on a flat, firm surface, strap yourself into the Posture Pump® Dual Disc Hydrator® (Model 1400-D) , and use the dual hand controls to get relief in just a few minutes’ time.

Here is a direct link to the product page: Posture Pump Dual Disc Hydrator Model 1400-D
For this item only, the company is offering a discount of 15%; just enter Z15 as the coupon code when checking out.

Check them out on Twitter for the latest news: https://twitter.com/POSTUREPUMP
They also have a Facebook page:  www.facebook.com/posturepump/

This product is made in the U.S. with quality materials that are meant to last – one lady has had her Posture Pump® for a decade! The company has other items that may serve you well too – check them out! Posture Pump

The Good Doctor

Posted on by akiwifreund

The colder weather is creeping in, and the vines that have clung to the outside of my building and my window in particular have changed to a bright red, signaling shorter daylight hours. The school of thought used to be that the cold stopped the leaves from keeping their green; instead, now we know that it’s the actual length of daylight hours that makes the leaves change from green to gold and red and burgundy.
2016-10-18-14-14-03Now that we are staying inside more, bacteria are just rolling around and proliferating like little Tasmanian devils. The little jerks caught up with me. First I caught the flu, and after five days of that it turned into a double ear infection (the nurse practitioner said both ears were severely affected but neither had perforated, luckily). Three days later I developed bronchitis…because why not?

In the middle of that mess while I was running a fever, I kept my appointment with my GI doctor because he’s very much booked ahead of time and it would take me months to get another appointment. I desperately need my medication for acid reflux because missing it for even a few hours is agony, plus I needed to discuss my new MCAS diagnosis with him so he would understand the importance of keeping me on the medications. He mentioned at my last appointment in February that he wanted to wean me off of the medications because he didn’t want me to develop long-term usage side effects like osteoporosis. Now it looks like I’m just going to have to live with it and be the old lady hunched over the shopping cart.

I had forgotten between February and now how much I like Dr. Chaudhary. I’m even going to use his real name because that’s how much I like him – no need to hide him behind behind a stage name. He is one of the few doctors who has not sent me away and he is not intimidated by the complexity of my body.

Dr. Chaudhary knows my primary care doctor, and so we chatted about her for a moment. Then we talked about my new diagnosis, and I thought ahead of time to bring the paper copy of Dr. Afrin’s notes. I knew Dr. Chaudhary would have access to Dr. Afrin’s notes in the system even though they belong to two different practices, but because Dr. Afrin’s notes are INSANE – and they are – I thought it would be better to bring the paper so he could flip instead of scroll.

Dr. Chaudhary paused and looked at me and said, “Can I be honest with you? I want to be honest with you.” I told him yes, that would be fine. He said, “I don’t think that Dr. Afrin can help you with the problem with the CSF, sweetie.” I immediately started to get teary-eyed, but told him that that was what I was thinking too, it’s just a very emotional conclusion for me, and he said he understood. (Even as I’m writing this, I am crying.) Dr. Chaudhary said that Dr. Afrin will probably get a lot of the other stuff under control if we can get the right combination of medicine going. I obviously know the drill.

Dr. Chaudhary then asked me who my neurosurgeon was. I had to explain to him how I had tried to go through every healthcare system in Minneapolis/St. Paul, as well as the Mayo, as well as petition to be sent to Johns Hopkins and to the Cleveland Clinic, but was turned down every time (the doctor handed me a tissue). I also told him about the three doctors at the U of M who misdiagnosed me and how it affected my request with the NIH Undiagnosed Diseases Network turning me down, and how my primary care doctor didn’t advocate for me. He seemed especially troubled by the last bit because she was his former student and co-worker but he didn’t ask any further questions on that matter. I asked Dr. Chaudhary if he had any connections, but he said that the one person he would send me to went back to India about five years ago, so that was no longer an option.

This whole exchange about my ongoing neurological mystery took about 7 minutes. What makes him a good doctor – hell, a GREAT doctor – is that neurology is NOT his area. Dr. Chaudhary still talked to me as if I knew what I was talking about, and he certainly didn’t offer up lame diagnoses like myasthenia gravis which has nothing to do with me (ahem, University of Minnesota Neurosurgery and Neurologists!). A friend asked what made him a good doctor. To me, a good doctor isn’t one that is just empathetic or sympathetic, because quite frankly, I get that all day long. Dr. Chaudhary is invested. All I can say to that is you know it when you see it.

I got my scripts refilled. As he was leaving, Dr. Chaudhary said, “I will always remember you. You are my patient who is the opposite of the doll – you stand up and your eyes close, and you lay down and your eyes open! Take care, my dear. Do not give up. I know it is hard, but do not give up.”

I wish all of my doctors could be like him.

Maybe I’ll Go To Stanford After All

Posted on by akiwifreund

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

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

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

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

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

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

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

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

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

This Is Going To Sting A Little

Posted on by akiwifreund

My day started early – stupid early. I didn’t mean to, but I only got three hours of sleep because like with all other nights before big appointments, my anxiety skyrockets. My alarm was set to go off at 4:55 a.m. but I woke up at 2:35 a.m. I tossed and turned, and then out of habit my fingers found the spot on my left glute and pressed it and I wondered for the thousandth time if I should have it checked by the dermatologist because melanoma and squamous cell carcinoma run in my family and I never date anyone long enough to remember to ask that person to check the mystery spot on my ass that I can’t see myself. Then I checked Facebook and Twitter and Instagram and all of my email accounts. Then I put on a few terribly cheesy movies from Netflix but couldn’t make it past the first 10 minutes before giving up and searching for another one. Finally I turned off my alarm before it sounded and showered and readied myself for the day, and took my handful of morning medications.

The first appointment was at 7 a.m. with the nurse practitioner working with Dr. Afrin at the University of Minnesota; he is the granddaddy of mast cell activation disease and his patient log is backed up so much that he’s booked out one year in advance, so the NP is helping to do the follow-ups. It was our first meeting and it was after my initial follow-up had been postponed in favor of more testing, so I was already preparing myself for the absolute worst. After all, I have gotten the speech so many times: “I’m sorry, your tests are inconclusive, so I can’t continue seeing you.”

One of the first things the NP said to me was, “I have never seen a histamine level that high before.” We talked about a lot. She gave me about 15 pages from Dr. Afrin to read – and they are prose-heavy, so it’s going to take some time to go through everything. I’m going to have to do a lot of trial and titering up with the medications to see if I can figure out a dosage and frequency that works. He indicated that we are about a decade out from understanding more about the intricacies of MCAD. The bottom line is, I have it. He might be able to make my life more comfortable but there is no cure.

I talked to the NP about my feelings about sending part of my drainage catheter to the research scientist in MI (if she wants it) to see if mast cells are causing problems on the shunt – maybe that’s what’s causing problems for a lot of shunt patients? Also, the NP has no idea if resolving my histamine and inflammation issues with MCAD will actually make it easier for me to have a shunt inside of me. Also, she had no idea if that’s the reason I needed one in the first place. And because I’m still having a lot of issues brought on by the PTSD/anxiety/depression, I did cry in the appointment (like I do now in all appointments), but only once. All of the sudden towards the end of the appointment, the fluid moved down the shunt and both of my eyes spontaneously opened. She got up to get a light and checked my pupil reflexes, and remarked that she had never seen anything like it. I told her that I never had any warning but I knew that I was a magical number between air pressure, humidity and temp; after a few minutes, the shunt clogged and my eyelids drooped again and everything went back to being paralyzed.

After that appointment, I had to come home and meet with the supervisor from the organization that employed the woman who sent me the fire and brimstone craziness. We had to talk about a lot of different issues including trying to find housing for me (since I can’t live with anyone who has animals – my friends and relatives are all breathing big sighs of relief!) and the public housing list wait list is something like 1-3 years (I have no idea what I am going to do between now and then, though there is something I can apply for with the state of MN that is a status of disability that has nothing to do with money but does get me qualified for services and housing). We also talked about getting me help if and when I get shoulder surgery since I won’t be able to do things like haul around laundry.

This was the first time that I met with this person, and she was asking me to fill in some information about why I was having such a hard time with finding neurologists and neurosurgeons. Every time I have to talk about it, I immediately start crying – that’s what clued my therapist in to the fact that I’ve got PTSD – and it’s emotionally draining. I’ve stopped apologizing for getting upset. So I walked her through the Three Stooges at the U of M who completely sabotaged my case with the NIH Undiagnosed Diseases Network as well as Social Security Disability.

I was supposed to go to a social gathering tonight, but I called to cancel because I wouldn’t have gotten home before 10:30-11 p.m., and I have to get up stupid early tomorrow, around 4:45 a.m. again to see the orthopedic surgeon. I’m really fucking tired. I’m so tired that I’ve been sitting here in the same spot for about 4 or 5 hours and I just realized that I put my lounging dress on backwards (it’s got a scoop neck in the front and a deep “V” in the back) and I really can’t be bothered to fix it. Normally I would be a little mortified, but at this very moment, I do not care.

I think about how this is breast cancer awareness month. I think about how everyone understands the gravity of cancer. I think about how five days after one of my surgeries, someone told me I looked fine, and I probably didn’t need help.

I think about how I never knew it was possible to have a disease that couldn’t be diagnosed for this length of time, and that doctors could turn patients away.

I think about how it’s been 6 years and 3 months since I’ve gotten sick, and I may never know what the real culprit is – but it’s funny that my body kicked it into high gear just as MCAD was beginning to be identified. At least I have that label.

Oh, and the doctor put in my notes that I had a “stunningly good memory for the entirety of my history including specific dates for each event” but that my appearance is a “chronically ill-appearing woman who looks a bit older than her stated age….”

Ouch. I always am guessed to be 8-10 years younger, at least to my face.

Can’t Find What You’re Looking For? Try The Thesaurus!

Posted on by akiwifreund

This was cute. Normally I’m not a fan of the Copy-and-Paste-Monster, because clearly the man is sending out hundreds of messages and just waiting to see who responds, but this guy either didn’t ask a friend for a second opinion before he started sending his out en masse or he had great confidence in his writing skills. Whatever the reason, enjoy:

Hello hope this finds you well!
I wanted to take a moment of your time and introduce myself, my name is J++++++n.
I have read your profile and really liked what you said concise and interesting.
Anyways you seem like a very interesting person to me and I would enjoy getting to know you better. Check my profile and hopefully there’s something that will interest you and if so, and you are interestead feel free to write me back.
Have a great day.

(Just as a reminder, this is what my profile says:
*******I’M ALLERGIC TO:********

– Hookups, FWB, DTF
– Threesomes, foursomes or moresomes
– All animals furred or feathered (even “hypoallergenic” animals), though I love them
– Misogynistic behavior
– Lame excuses
– Cheaters, liars, thieves
– Poor dental hygiene
– Conspiracy theorists
– Stalkers
– Contemporary country music, rap, hip hop
– Republicans
– Being called “cutie”
– Organized religion or prayer

What I’m doing with my life: Writing articles regarding rare and chronic diseases, trying to find the joy in life with new restrictions. Seriously – there is no way “arrow root pudding” is a real dessert!

I spend a lot of time thinking about: the fact that no one wanted to share a deep, dark secret, so OKC took that question away.

You should contact me if:
– You practice kindness and wit.
– You strive to live an authentic life.
– You are not addicted to beverages or chemicals.
– You are a non-smoker (of all things) and don’t use chew/snuff (ever).
– We live in the same country; my preference is to connect with someone in the same metro area because I dislike long distance relationships.
– You understand that no means no.
– You know and use proper grammar, spelling and punctuation.
– You would like me to proofread your profile for grammar, spelling and punctuation errors.
_____________________________________________________________

You would think that with just the basics, there would be at least a few things to chat about, even if it’s “Why can’t I snort coke off your tits?” – if you remember, that’s a gem from a previous OKCupid guy. Anyway, I would be interested to know why the guy doesn’t know any other term to use besides interested because there’s a whole world of knowledge out there on Thesaurus.com.)

********Fun fact:  In the time it took to sign on and copy my profile to this post, 23 guys looked at my OKCupid profile! Dangit, there’s going to be more material soon, I can just feel it. Breaking hearts and taking screen names……

Nothing Like Designer Jeans

Posted on by akiwifreund

I’m listening to Pandora right now, and Whitesnake’s “Is This Love” happens to be playing. What were the hottest jeans from 1988? Maybe they were Guess?, maybe they were Girbaud (with the little loop at the top of the fly). I remember that it was important for guys to have Levi’s, at least in the little town where I was attending school when Tawny Kitaen was straddling two Jaguars.

There’s trends in medicine too. Remember how just over a century ago, no one really had a grasp on how important it was to wash your hands? And remember how 80 years ago, antibiotics were just around the corner, but before they were available to the general public, syphilis could very well be a death sentence? But it’s not so much trends as it is that we become more aware and educated.

Medicine attempted to treat PTSD in soldiers and document it for as long as wars have been fought. Different names have been attached to it; “Soldier’s heart” for the Civil War, “shell shock” for World War I; and “Combat Stress Reaction” for World War II.

After WWII, the American Psychiatric Association worked to put together a label that would apply to all symptoms that would appear as a result of traumatic events, not just war. It has actually been through five revisions to date and includes four different types of symptoms: reliving the traumatic event (also called re-experiencing or intrusion); avoiding situations that are reminders of the event; negative changes in beliefs and feelings; and feeling keyed up (also called hyperarousal or over-reactive to situations). Most people experience some of these symptoms after a traumatic event, so PTSD is not diagnosed unless all four types of symptoms last for at least a month and cause significant distress or problems with day-to-day functioning (see PTSD: National Center for PTSD ).

Since I’m part of the Chronic Illness Bloggers network, I’ve been able to read a lot of my fellow bloggers’ unique perspectives, and more than once I’ve seen references come up about PTSD in medical settings. I cannot believe what some of you have had to endure. I worry about putting on my Girbaud jeans and raising my hand and saying “Me too,” but after having many discussions with my counselor, she has confirmed that I indeed have PTSD triggered by my experiences brought on by this mystery disease.

Was there one big bang? I don’t think so, just like there isn’t one big battle in war, but a whole war. There were certain things that were especially traumatic. The time that my neurosurgeon stood in the doorway of my hospital room on the night of my birthday in 2013 after my fourth surgery and told me he would have to send me home nearly blind because he was just in there and it had to be something else, not a shunt failure was especially traumatic (turns out that it was a kink in the shunt that developed that would not have been discovered if I would not have thrown a hysterical fit to have a nuclear shunt study performed).

One story that I told to my counselor in this week’s session happened January 2014. 2013 was my big year of surgeries – six in all. I got to know my symptoms of shunt failure really well, plus I figured out that I was making copious scar tissue and adhering the shunt to my chest and abdominal wall. At various times I also leaked great big pools of CSF out of my spine so that I had a softball-sized vat of fluid sitting on my back, and a more dangerous situation of having a shunt in my brain and another one in my back, making it harder to control pressure.

My last surgery in 2013 was December 21st; that was when my neurosurgeon finally believed me after 2.5 years that I was allergic to the shunt, when he saw for himself that my abdomen was red and inflamed, like a “war zone,” as he put it. I told him that I needed to see an immunologist and a rheumatologist, but he said that I was “taking it too far.”

A month later, my shunt clogged or strangled again and it was adhered to my abdomen by scar tissue. I went to the ER and saw the on-call neurosurgeon, someone I had never seen before but who was with Barrow Neurological like my neurosurgeon and had access to all of the notes from my surgeries and could talk to my neurosurgeon. I demonstrated for him my usual problem when my shunt isn’t working and my symptoms come back: when I’m upright, my face is paralyzed and I can’t open my eyes; when I lay down, my eyes immediately open because the fluid moves away from the brain stem. When I sit back up, the fluid moves back to the brain stem and presses on the nerves again.

The neurosurgeon went away. The regular ER doctor came in and said I had a clear case of a classic migraine headache. I told him it was ridiculous and asked if anyone read my notes from my chart from all of my other admissions and surgeries, and he said he didn’t know, but that was what the on-call neurosurgeon said. Then he handed me a prescription for opioids. I was absolutely floored. I demonstrated for him what happens when I put my head parallel to the floor – my eyes open – and what happens when I’m upright, and asked him if that’s “typical migraine symptoms,” and he said he didn’t know, but that was what he was told, so that was it. I told him it was bullshit (never raising the volume of my voice, by the way). I told him that if they discharged me, I was going to turn around and ask to be admitted again. He told me they would refuse to treat me. I asked him why he prescribed pain medication for me when I wasn’t in pain, my shunt was simply clogged. He said that with patients with clogged shunts, they always get headaches, so if that was really my problem, I should have a headache. Then he left.

I was openly crying and shaking. The nurse came in and her whole demeanor toward me changed. She told me that I had to stop being abusive to them, they were just trying to help me; all the while I couldn’t even speak, I was so stunned. Then she yanked the IV out of my arm without putting pressure on the puncture so that I bled all over and then snidely said, “Oh, look at that, you’re a bleeder!” I just sobbed harder. She left the curtained room and I shut the curtain and cleaned myself up and managed to get changed. She came back with the discharge papers. I asked her if she could walk me out of the maze of the ER back to the lobby. By then it was 4 a.m. and quiet. She told me that she was too busy and that I had to find my own way out. My room was next to the nurse’s station, and many of the night ER staff had congregated there and were observing the exchange. They could also see that I had a cane and paralyzed eyelids that were mostly closed; one offered to help, but my nurse said, “She’s fine.” Another person asked me if that was true, but I couldn’t speak. I just kept walking. You could have heard a pin drop.

I finally made it out to the now-empty ER lobby and managed to call a cab and directed my face to the windows so I could watch for the familiar colors of the cab company. When the pressure gets bad, that’s all I can do – make out shapes and colors.

When I contacted my neurosurgeon’s office after that visit, I discovered that he actually upheld the on-call neurosurgeon’s decision to diagnose me as having a migraine episode, even though my neurosurgeon had been following me for 2.5 years and knew my symptoms just as well as I did at that point and performed all 8 of my surgeries to date. Everything that I have told my neurosurgeon that has been wrong with my body has been completely correct, and for him to suddenly go with something as far-fetched and outlandish as to describe this as a migraine episode immediately caused me to distrust him deeply. Before I would have talked to anyone who would listen about how great he was about thinking outside the box; after that I only hoped to survive.

Because of this horrible ER visit, I went home and started stretching my torso because I could tell that the shunt was adhering again to my abdomen only 3-4 weeks after the previous surgery. It was the only thing I could think to do. In the process, I managed to stretch so vigorously that there was a tug of war internally and I created a break in the shunt, which led to a leak…and because my neurosurgeon finally conceded that my demand to get an immunologist and a rheumatologist involved in my care was actually very practical, he refused to fix my leaking shunt for almost a year, which was EXTREMELY painful.

But that’s another story.

Back to PTSD. Post Traumatic Stress Disorder isn’t reserved for those who only experience war, or even a natural disaster. It certainly applies to anyone who has been abused in a relationship.

And it certainly applies to me. And I’m not even done with the war. I’m not even “post” anything yet. 

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How Nice, She Included A Map

Posted on by akiwifreund

I’m officially clinically depressed.

I don’t know who was the first to diagnose me. It doesn’t really matter. You would be depressed too if you had worked your way through 54 doctors and none of them could tell you what was causing your severe physical issues, a good number of them misdiagnosed you, somewhere around 10 said it was psychosomatic, and around 49 of them told you to go away and don’t come back.

I’ve got anxiety too.

I can’t talk about a lot of the CSF stuff without becoming emotional. I also don’t sleep the night before appointments. Who wouldn’t react the same under these circumstances?

At some point, whether it was my counselor or one of my medical doctors or the actual medical insurance, someone determined that I should get help from a county organization that offers comprehensive help with mental health. Fine. I’m doing meditation, and I’m trying to be social while also trying not to wear my body out, and I’m trying to watch videos of babies and cats and dogs to keep my spirits up, but fine, if this is a resource that I can benefit from, then sign me up. But I told them that I still need a hospital bed so I can try to avoid bedsores, and I still need a neurologist and a neurosurgeon that won’t turn me away and who will listen to me.

So this past Monday the 19th I had my initial intake appointment, and two women from this organization come to my apartment to discuss the program and sign forms with me. I signed a release form for them to talk to my counselor, with whom they are very familiar, and they also went through various questions, one of which was, “Do you have a religious preference or religious beliefs?” I emphatically said, “No, thank you!” They smiled and nodded, and we didn’t go into more detail, but it was clear that I have zero interest in religion.

So imagine my surprise when I pull this anonymous letter out of my mailbox this afternoon:
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At first, I thought one of my friends (or even a frienemy) was having a laugh at me, especially since religion has been a hot topic in light of the stabbings and shooting this last Saturday. I wracked my brain; I thought there was a possibility it was the crazy German woman who was always telling me she was better than me and in addition, she was a good Christian; I fleetingly wondered if it was a relative of the ex or maybe a recent new acquaintance who contacted a friend for my address to send me this information about this can’t-miss fire and brimstone. The envelope wasn’t much help because it didn’t have a name on the return address, but I looked up the numerical portion anyway…

Bingo.

It’s from one of the two people who sat on my couch on Monday morning. They both heard me firmly say “No, thank you,” and both smiled and nodded. When I talked to them about my medical history and both were absolutely dismayed at the number of surgeries I had, my inability to still get a diagnosis, the swiftness with which I am sent away, the sheer number of doctors I have seen, my accuracy in my communication to my doctors and their refusal to “hear” me…let me say that last part again: THEIR REFUSAL TO HEAR ME. They said that they would collaborate with my counselor and also have an RN visit my apartment so that my physical and emotional needs could be addressed, and they would also review my medical records so that they would be worded more accurately for my disability case.

They saw me become emotional when I said that doctors were ignoring me when I told them exactly what was wrong with me and it would prolong my agony and pain, sometimes for years, when they ignored me; I was never wrong. They said again, “Your biggest challenge is that doctors don’t hear you.” Yes!

So why didn’t they HEAR me when I said “No, thank you” to religion?

There is a certain arrogance that comes with religion; if you practice religion, why is it assumed you are better or your life is better than if you don’t? If one person is religious and the other person isn’t and there is some debate about whether or not a ritual like going to church is practiced, why is the assumption that the ritual is the obvious choice and that the religious person should be made happy? Why can’t it be the other way around? Pray on your own time. God is everywhere, right? Why do you have to go to church to put money in the pastor’s wallet?

I got this letter after business hours so I have been left to my own imagination to compose letters, and most of them ended with an emphatic “Fuck you.” Most importantly, this organization is a county organization, and no where does it state that I must follow a certain religion in order to receive services. That was one of the first things I looked for, because if I would have known that that was a requirement to be in the program, I would have told them not to bother before making the appointment.

So now, just three days into the program, I have to file a complaint with the Clinical Director.

If I do compose a letter, it’s going to include the fact that I have traveled around the U.S. and have moved across the U.S. four times, and have used up two passports, and since I’m a 42-year-old woman who has lived a fairly adventurous life, I know what options are available to me as far as belief systems go. “Have you considered science?” I think I’ll end my letter with that.