Save The Date

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

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

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

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

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The Best Little Gift Guide

I used to pride myself on being able to find little things – and big things – that seemed like a perfect fit as gifts. I would look or listen for clues. Okay, maybe sometimes I wouldn’t get it quite right, but at least I would try. My shopping would take place over the course of the entire year and during festivals and trips, because you never know when you will stumble on something unique that screams “_____!” (Use your imagination.)

But times are different. It seems like the majority of the people I know are much more careful about how and where they spend their money because of various constraints or social awareness. I have to be careful too; I no longer have an income, so no extra money to spend during the holidays. This list that I’m going to lay out is for someone – like me – who has little or no income, who might not be able to buy much of anything anymore.

1. Time. This is a big one, and it’s free! I simply can’t get out and socialize like I used to, because my body has put a hard stop on that. Sometimes I don’t want to be by myself. I love it when people visit or call, but I don’t always initiate stuff like that because I don’t want to be a burden. There’s nothing worse than a whiny-ass friend constantly saying “Pay attention to me,” right?

2. Gift cards. Conventional manners/wisdom say that giving gift cards is tacky because then people will know how much you spent on them, yadda yadda yadda. Bullshit. I love gift cards. I especially love them when my entire monthly budget has gone to rent/utility/medications and I have nothing left over to buy groceries, and I have a lovely gift card to the rescue.

3. Wheels. Man, I miss driving. I miss those Saturday mornings when I would get up at 8 am and run around until 11 am and go to about 8 different places and get all of my shit done. Now I ride the short bus and I can only go one place, and it takes me 2-3 hours. And it’s a drag. And I never know who’s going to be with me and if it’s going to be a bat out of hell drive. I would love it if I could have a whole morning of driving around for errands, like dropping off my recycled clothing/rags, recycled toner cartridges, disposing of hazardous waste, petting animals at the humane society, recycling old medications, getting 5 favorites from Trader Joe’s and 6 favorites from Hy-Vee and 4 organics from Aldi. As a side note, disabled people like to recycle too. It’s just that we can’t easily get to these locations and facilities. Plus, me getting out to do these things instead of doing them for me means I get to get out. (As a side note, I have discovered that more than a few people have assumed that the short bus is free. It’s not. It’s actually more expensive than the regular bus. Each round trip for me is nearly $10. It’s really, really expensive when you have no money coming in at all.)

4. Independence. My oldest sister made up a list of modified items that would have made her life easier, like rounded chopping knives that were easier to grip. We were puzzled at the time; it didn’t seem like fun, especially for Christmas. She had debilitating MS and was bedridden because she had lost the use of her legs and some of the finer motor skills of her fingers and hands. Looking back, and living what I am now, I understand that ignoring her list and insisting that we only get her “fun” stuff was a huge mistake. It is not only fun but a huge relief to get everything you ask for and need. So if someone asks for a modified chopping knife, get them the chopping knife.

5. Entertainment. I’m a movie/TV snob. I don’t like most sitcoms because there’s a lot of yelling involved. I also don’t watch cartoons. I know what I like, and I’m a binge watcher! I’m a loyal customer of Netflix, Hulu, and Amazon Plus. Yes, all three. They have some overlap, but there are some things that don’t appear on all three, and Hulu allows me to watch network shows that aired the night before. If you love me or someone like me who is in bed a lot, give the gift of streaming entertainment. I guarantee you it will be used. (Side note: I’ve tried reading. I used to be a voracious reader. Because of brain damage and eye problems, I don’t read much right now. Zero memory and attention span. Squirrel!!)
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6. Amazon. This deserves its own category. I have used Amazon for vitamins, durable medical equipment (that was not covered by my insurance), ingredients to make my own deodorant/antiperspirant, and tons of OTC medication like Benadryl and Pepcid, which I take megadoses of. Of course, I use Amazon Prime too, so I get the movies, and it comes automatically with the music service too. Another great thing is that if you purchase through Smile.Amazon.com and designate a charity to receive 0.5% of your total spent, you can automatically make donations. I don’t have money to donate to any causes, so it still makes me feel as if I’m making a contribution, even if I can’t hand anyone cash. So you will never go wrong with an Amazon gift card.

7. Skin. Disabled people like luxury stuff too. Not everyone wants to smell like an Avon or Dove whorehouse or litter box. A little company called Villainess was just purchased by a new owner and sold out within a few days of its new stock because everyone was so excited to dive back into its soaps, lotions and scrubs. I’m telling you, their stuff is sooooooooo yummy. I just got 3 of their jars of lotions. I’m going to wait to open the jars until I feel really poor because it should be used within 2 months of opening (less preservatives = better for your body) and I want to stretch them out. So keep an eye on them, and put in an order and make someone feel extra special.

Another great place with amazing combinations is Black Phoenix Alchemy Lab. I’ve had some bottles for 2-3 years because I have enough to rotate them around and not smell the same every day. You can buy samples (“Imps Ears“) instead of full bottles, but if you are sure you are going to like all of the flavors that they list, go ahead and buy a whole bottle. I have very rarely been disappointed. Buying scents for other people is a crap shoot, so be very cautious! I’m deathly allergic to lavender and patchouli. Anybody can be allergic to anything. If you aren’t sure, there are always gift certificates.

8. Pain control. I reviewed two different lotions in my blog, and I recommend them both: Mo’s Dream Cream and Invigorate. You can’t go wrong with either of them.

The Oska Pulse is a device that is a financial investment, to be sure, but it has a 30-day money back guarantee, and I use mine every day – because there isn’t a part on my body, somewhere, that isn’t hurting. Sometimes I end up using it six or seven times on that part. I’m just grateful to have it because I always end up feeling better. (It is important to note that it shouldn’t be used around any medical devices that are surgically implanted that could be affected by magnets, like shunts, stimulators or pacemakers. My shunt is strictly all silicone because I’m allergic to nickel.)

9. Massage. I go to a massage therapist once a month. There have been a couple of times where I have second-guessed myself and the wisdom of going, especially when I’ve had to shell out extra for medications and money is getting low, but when I’m on the table and getting worked on, I know I need it. First, it’s hard on my body to be in bed so much. Second, I rarely ever have any physical contact with anyone else. The massage is it.

10. Activism. I can’t do all of the work. Literally, I can’t do all of the work. The best gift you can give people that you don’t even know personally is to tell your elected officials that disabled people need housing, healthcare, transportation and good nutrition. I’m still waiting for housing that I was promised 8 months ago; it would mean that I would have things like grab bars, instead of constantly falling in the shower, and affordable rent, instead of paying full price on zero income (still no disability income after nearly 3 years of filing). Do not buy into this idea that everyone who is disabled should be punished.

Honorable Mention:
Check out The Unchargeables for a variety of chronic/invisible/rare diseases for gear – you can even look for items according to the disease! I checked my alphabetized list and they have a few of mine in there. Pretty impressive! And for each disease, there’s a bunch of items, so you’re not limited to just a t-shirt or bracelet.

Oska Pulse Holiday Sale

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People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

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

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

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

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

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

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

If you are a chronic pain patient and your support circle is wondering what to get you for the holidays, the Oska Pulse would be the perfect thing to bump to the top of your list!
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How Much Is That Doggie In The Window?

Please enjoy this post from a fellow chronic illness blogger.

I never, ever, EVER ask other people for advice. But they love to give it to me. Even when I tell them that I don’t want it, they love to vomit it all over me.

“Have you tried taking Benadryl?” – Well, now, that’s the wrong question. The correct question is, “Have you taken more than twelve times the normal dose of Benadryl every day?”

But you’ve heard this from me before. So I’m going to take this in a slightly different direction.

The reason why I don’t like support groups is that sometimes they spread information that’s just downright wrong. I mean we’re not talking which color of the rainbow is better than the other, but shit that could kill you. And when it’s posted in a public forum, I’m absolutely going to speak up, even if I’m the only one doing so.

One woman posted something about the possibility of being allergic to her “hypoallergenic” dog. Immediately my alarms and flags went up, because people, there is no such thing as a “hypoallergenic” dog. All dogs make these proteins that are in dogs’ saliva, skin cells and urine; maybe not everyone reacts to them, but all dogs make them. I responded by saying that we have to avoid spreading misinformation because we have to understand that all dogs make these proteins and there’s no such thing as a hypoallergenic dog.

Then this dumb twit jumps in and tells me that I had better “watch what I imply” because her little girl has a dog that she loves. [Internal conversation: This one doesn’t know the definition of “imply,” because I didn’t “imply” anything, I came right out and said “Stop spreading misinformation.”] I told her her daughter’s affection for her dog doesn’t change the fact that her dog produces allergens in her saliva, dead skin cells and urine. Then the twit told me it was my opinion. I responded by saying no, it’s a scientific fact that all dogs produce the allergens. Then she told me that I was being a drama queen and that not everyone reacted the same to all dogs, just look at her daughter!

To drive my point home, I repeated again that it was scientific fact that all dogs produced the proteins in their saliva, dead skin cells and urine. Not all people reacted the same way, but all dogs produced them, and there was no such thing as a hypoallergenic dog. [Another side note: I am thinking of her daughter, and how sad it is that she is passing down her lack of education.]

Then another guy posted pictures of him and his “hypoallergenic” dogs. Fucking hell…..

And other people chimed in saying, “Oh, maybe your dog ran through some grass that you are allergic to,” or “Oh, maybe your dog ate something you are allergic to.”

But then the original poster admitted that her dog was staying with her parents for the time being because there is the possibility that she is actually allergic to her dog. 

BECAUSE HER DOG MAKES PROTEINS IN HER SALIVA, DEAD SKIN CELLS AND URINE THAT ARE ALLERGENS.

The reason that it’s such a big deal with this disease is that we can go into anaphylaxsis at any time, or we can have chronic bronchitis or pneumonia or other infections that we can’t get rid of because of weakened immune systems because our mast cells are going fucking bonkers. Some in the group have said that they would rather give up all food (and have) than give up their animals. That’s their choice, but I’m not pro-misinformation. The AKC is already fucking people (and dogs) over, but that’s a story for a different time. But I’m guessing that the twit who told me I had better watch what I say paid a fortune for her Yorkie from a puppy mill.

Give Me Liberty (In A Dropper)! – Product Review

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Unfortunately, one theme that is constant and recurring in the chronic illness community is pain and fatigue. No matter the ailment or diagnosis, these are our constant companions. In my family alone we are a soup of autoimmune diseases – where there is one, there are many. I have Hashimoto’s thyroiditis, alopecia universalis, hidradenitis suppurativa and mast cell activation syndrome. Other immediate family members have lupus and RA, and branching out we have polymyalgia rheumatica and MS. The only one on my personal list that doesn’t cause me pain and fatigue is the alopecia, and that’s because I no longer get 75 shots in my scalp every three weeks.

I was really excited to have the opportunity to try the Liberty Lixir Ultra High CBD Tincture.
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Now, I don’t know how much you, dear reader, know about CBDs. I also don’t know how much you know about hemp vs. marijuana. I can give you a quick and dirty explanation since I was on the medical marijuana program through the State of Arizona for some months because I’m allergic to the shunts that have been implanted in my brain and it’s incredibly painful. Hemp = legal, made into all kinds of products including paper, clothing, balms; can be cooked to extract chemicals at certain temperatures called CBDs, which are natural painkillers. Has less than 0.3 percent THC on a dry-weight basis, therefore making it nearly impossible for you to get high off of hemp. Weed = much less legal across the board relatively speaking, beloved for its much higher THC content and therefore “trippy” effect, also can be cooked at a certain temperature to extract CBDs.

This particular product is made from hemp. Because it still has that trace amount of THC, you have to be cautious about consuming this if you are going to be subjected to any testing. It’s a bummer, I know, because it’s not like you’re doing something you shouldn’t be – you’re just going for some pain control.

And this little bottle does a stellar job. Liberty Lixir packs a good wallop with the 1,000 mg of CBDs. It’s a very simple formula too. The hemp oil is mixed with coconut oil and vitamin E, and as noted on the bottle, you don’t have to worry about GMOs or anything unnatural. As you can see, the solution is completely clear:
20170804_200759-1 The instructions are simple. 10 drops under the tongue, hold them there for 60 seconds (so they can absorb sublingually). It’s the fastest and best way to deliver meds to your system instead of trying to absorb them through your acidic stomach.

I’ve been walking lately and working on my physical therapy exercises to make myself stronger and improve my balance, because I have a lot of little falls during the day. But this also makes me incredibly sore and tired. I just can’t win! Sore from being up, sore from being in bed all day. As soon as this arrived, I started with the doses.

In about two days’ time, I started feeling a marked difference. Now, I feel like I should be a skeptic and say that CBD oil seems like it’s too good to be true. Maybe it’s a placebo effect. But I am going to be very specific and say that I’ve been on the medical marijuana program and used the edibles and those still got me very loopy – unfortunately. I didn’t like them. I want to be in full control AND feel better. And I feel like I achieved that with Liberty Lixir. [If you want even better results, you can eliminate foods that cause inflammation and allergies, which I had to do out of necessity because my lips swelled up and I lost the entire lining of my mouth.] But I feel like my joint pain is down to about 30-40% of what it was before.

There were only two small things I had to get used to with this product: 1) The oil base. I’m not used to having straight-up oil in my mouth. 2) There is a hint of “green” taste that is particular to hemp/marijuana products that I always notice and others may not be bothered by – I’m just a super taster.

Liberty Lixir is something that I (and you) will want to continue using once it’s started. I can’t imagine not having it as part of my daily regimen now because I feel so much better. If you haven’t tried CBD oil for pain control before, this is a good hemp product to give it a whirl. This bottle lasted me approximately one month.

We’re Breaking Up

“There’s plenty of fish in the sea.”

Are there, though? I want someone who really listens to me and understands where I’m coming from, who sees me for who I am and not who they think they would like me to be. I’m sure they wish I would lose a little weight, or dress a little better. Maybe they wish I would talk about something else besides always going back to my rare disease. But I can’t, because it rules my life.

I’m talking about my doctors, of course. They keep breaking up with me – or at least, it feels like it. And this is incredibly difficult as a rare disease patient.

The first one to jump ship was my primary care doctor. To be honest, I was a little relieved. I had had a difficult time landing her in the first place – other doctors writing things in my records such as “Munchausen’s” – but most recently she had told me to stop looking for a solution and to just accept it, and that there probably wasn’t anything really wrong with me. She had seen my MRI and claimed that she didn’t know enough about the brain to make a judgement call about what she was looking at, but JFC, even I could see that if all of the big, cavernous spaces are gone and the corpus callosum looks like Charlie Brown’s hair swirl, there’s a problem. Anyway, hers was the first letter to arrive on the University’s letterhead.

The second was my pain doctor. I knew about his desertion ahead of time because we talked about it during my last visit with him. He worked it out so I can remain his patient at his next office. HOORAY. I don’t have to train in another doctor. I like him. We have mutual respect. But I still got his letter on the University’s letterhead and an official-sounding offer to continue my care there with someone else, if I wanted. (No, thanks.)

The third one was my mast cell disease doctor. This one is actually extremely devastating. I felt quite lucky to have found him and to have gotten my diagnosis, and then to have been under his care for about a year. The problem with this disease is that it was only named about nine years ago, and so not much is known about it. I probably fit into a different subcategory from a lot of people because my CSF and dura have been affected.

The mast cell disease doctor is relocating from Minneapolis to New York. His goal is to further his research; he will make himself available to any doctors who reach out to him with questions. He will also see patients on a cash-only basis: $2,000 each for the first two visits, then $650 for each visit after that. 

I can understand why the mast cell disease doctor would want this type of arrangement. He would not be at the mercy of insurance companies. He could run his office and research with full autonomy and receive complete compensation for his time, rather than having to negotiate contracts. And he’s not a young guy; I’m sure he’d like to reduce his own stress in the gloaming of his years.

Specifically, these are my barriers: 1) I’m on Medicaid, so I’m unable to go outside of the state of Minnesota. I’ve tried many times, and each time, the petitions have been turned down. It doesn’t matter how rare my disease is. 2) I can’t find local doctors willing to take me as a patient. Believe me, I have tried. I’ve sent them info ahead of time (per their request), I’ve gone in without giving them any hint, I’ve brought all of my records with me, I’ve bargained with them, I’ve promised not to be a nuisance, I’ve answered all of their questions…bitch, please. Any way that you can think of to convince someone to become your partner, I’ve done it. 3) I don’t have any way to save up money. My earning power is gone – it’s not like I can go to work and take my bed with me so I can keep the pressure off of my brain. I’m using up every last bit of my savings for living expenses while I wait for my disability hearing, which I believe will be in the next six months, so that’s three years guaranteed without a cent of income.

What happens if I don’t receive care? Well, it’s going to get ugly. My chest, arms and face have been covered in hives for the past month. I was supposed to get another prescription last week, but that was abruptly dropped mid-process. This is a crazy disease. Other patients constantly go into anaphylactic shock. I haven’t gotten to that point, though I sometimes have sudden shortness of breath, or lose my voice because my throat becomes suddenly raw. Unfortunately, for me the allergies continue to get worse and stranger, also a common factor in this disease. I won’t even go into the brain stuff, except to say that I know it’s being strangled too.

I can’t adequately describe what it’s like to have a rare disease to people who don’t have one, especially when it comes to finding medical care. I’ve had a fibromyalgia diagnosis since I was 23, and those of you who have chronic illness may have an inkling, but this is a completely different ballgame. I got a diagnosis last fall but have been sick since birth (and I’m 43 now). I only figured out a month ago myself – MYSELF – why I needed 10 shunt surgeries. There are no other documented cases like mine.

If I can put this in perspective, imagine that your child is one in a dozen in the world who has Progeria – the disease that makes children age prematurely, so that they look elderly as infants and young children (and they come with a plethora of underlying maladies). And imagine that there is only one doctor in the world who is an expert, so every child with that disease is going to that doctor. One day, that doctor is killed in a motor vehicle accident. Then there is no one else to treat those children.

That’s what it feels like right now to have my mast cell disease doctor break up with me. The disease affects more than a dozen people, but to actually find doctors who can and will treat me is impossible. I think it would be easier to ask a man to have a baby naturally. 

Back To Life, Back To Reality

I had the pleasure of planning my arts high school’s 25th reunion for my classmates. It’s difficult to explain, but our school was unlike any other that most people have attended. It’s a public school and we came from all over the state of Minnesota, we had to audition or submit portfolios as well as letters of recommendation, we lived on campus like a college, and we created life-long friendships (most of us). I’m not saying it was without flaws. But going to college was a complete let-down because we already did it all, and our skills were senior level when we went to our respective schools post-high school.

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The reunion officially lasted nine hours. We started with performances, some dancing, I handed out random door prizes (which included ramen, Pop Tarts or macaroni and cheese plus sticks of margarine but NOT milk – because we never had milk; also Nerf guns, and cassette tapes such as Crash Test Dummies, The Sundays, REM, M.C. Hammer, Bullet Boys, anything that would have been released by 1992). Then we headed over to a pub that served microbrews and sausages where whomever couldn’t make it to the portion at school hung out with us there. We were officially done at 10 pm, but some people wanted to keep partying, so they went back to one couple’s hotel room and kept it going until 4 am. I didn’t – I was toast.

(By the way, the picture with the classmates trying to pull open the doors is something I didn’t find out about until later. They were giving themselves a tour, not realizing that they locked themselves in an area and they would have to wait for someone to randomly walk by and let them out.)

Our turnout was excellent. My classmates are literally scattered around the U.S. and the globe. I haven’t lived in Minnesota for 20 years and would have been counted as an out-of-towner if I hadn’t been forced to move back because of my circumstances. I know that I have classmates in Sweden, South Africa, the UK and France for sure, but I’m also sure that I’m missing some places. So to have this many show up is considered a small victory. And everyone was helpful, mostly sober and didn’t want to leave.

When I was attending school here, my major was theater (located directly to the right of the dancing space where everyone is slapping hands and their shoes are off). I discovered there that I had a natural affinity for organization and detail. So that was the reason that I gave everyone for wanting to organize the 25th reunion.

But I had an ulterior motive.  Two years ago, and even continuing through to today, a lot of the classmates that traveled back for the reunion (either by driving or flying) have helped me. When I relocated from Phoenix to St. Paul, they contributed to a fund. Sometimes they organize and send me gifts. A lot of them have their own hardships to worry about, so I appreciate their contributions even more for that reason. So the fact that I could work out every damn detail for them and all they had to do is show up was great – and even better that they all had a really great time and didn’t want to leave. 

Unfortunately, I did have to ask for some work from a few of them, but being the wonderful people that they are, they stepped up and said of course, and blew the rest of us away. The school was under great scrutiny and was nearly closed, and I had gone to all of the state senators and representatives, asking them to come to about an hour and a half of our reunion to meet us to see what had become of one of the first graduating classes from this school. One of the representatives, Mike Freiberg, happened to be a classically trained pianist and agreed to accompany our opera singer – and wow! It was fantastic! In all, we had two writers, a violinist, an opera singer, and a dance instructor.

Pictured below is an example of many of the lockers – students are allowed to paint them however they choose. Also, the woman in the phone booth is one of the readers from the performances. The phone booth is an infamous one; it was down the road from us and is from before the advent of cell phones, and we all used to walk down the road to use it when we wanted privacy. 


So for the week after the reunion, I stayed in bed. It was totally worth it. I love these people. Some of them I’m lucky enough to see frequently, and some I suppose I’ll have to wait another 25 years to see, but we know we had a unique experience and kinda feel sorry for people who had to drag through regular schools. We had a completely amazing experience for our junior and senior years.

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Today, I had a doctor’s appointment for an outpatient surgical procedure. I’m not going to go into detail for what it was. I was just dreading it. So I got the usual notification from the cab company that the driver was on his way, and then I got a notification that he was outside. So I went out. He wasn’t out there. Sometimes it happens that the notification comes about 60 seconds before the cab. I wasn’t alarmed.

However, after waiting for about 12 minutes, the cab still didn’t show. Today the temp was 91 degrees Farenheit, and Minnesota is humid this time of year. Also a problem: My high-rent building’s front door was vandalized, so I can’t actually get in with my key. If I want to enter the building, I have to walk around to the back, which is the equivalent of walking the length of a city block because the spaces between the buildings are fenced and locked off. I also had no idea when this cab was going to show. So I called the cab company.

They claimed he was five minutes away. I have a GPS tracking map and he hadn’t moved. I explained that the heat makes my condition worse. I also can’t go back inside because I can’t go in the front. They told me to just wait. This is what happens to me because the cerebrospinal fluid builds up in my cranium because my shunt hasn’t worked for two years:

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Many times my facial droop has been mistaken for myasthenia gravis. I can assure you that I do not have that. I can actually slosh my CSF around, and when I tilt my head parallel to the floor, the paralysis goes away within seconds. Also, my face is not swollen. The muscles on the left have relaxed because they are paralyzed.

I was actually stuck out in the heat for a total of 35 minutes. When the driver finally got there, he first tried to force me to cross the road to him. I can’t see very well like this – this is as far as my eyes will open. When he finally came to my side of the road, he parked up the street so I had to walk to him, even though there were spots open in front of me. When I got in the car, I asked him to turn on the air conditioning. He told me I had to wait until he “got going.”

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When he finally did turn on the a/c, it was at the lowest setting to spite me. I had to tip over in the back seat to take the pressure off of my head, which at that point was absolutely unbearable.

When I got to my appointment, they took me back to the exam room and got me on the table. However, I wasn’t doing so well. The nurse and the PA both said I looked grey and the PA reclined the table while the nurse ran to get me some sugary drink. I whipped off my wig and they slapped wet cloths on my neck and head. I could tell my pulse was all over the place, but I knew this wasn’t a blood sugar problem – those feel completely different to me. [I am getting checked for POTS next month.] When I got up from the table, I saw that I had completely soaked through the paper with my sweat, which was disgusting, but they said it was an obvious sign that I was in distress. We made sure everything had returned to normal and we got on with it.

I absolutely wrote up a complaint to the cab company, with details and times. They have a contract with my insurance company, and if this driver can’t handle medical rides, he shouldn’t get them. Period. 

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

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

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

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

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

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

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

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

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

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

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

Pat, I’d Like To Solve The Puzzle

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This week I’ve been taking care of stuff; taking care of me by walking to make myself stronger, taking care of medical records, taking care of clogs in my sinks and taking care of throwing out excess trash. It’s the medical records that sent into emotional pits, though. I was angry after reviewing a bunch of misinformation and it was rolling around in my head. But then I had an epiphany.

Back when I started having operations on my cranium, when my shunts were relocated from my back to my brain, my neurosurgeon remarked that my meninges were incredibly tough to break through. I don’t believe he’s ever noted that on my medical records, though. But his memory is like a steel trap so if I went back to him, he will probably be able to recall it with certainty. It certainly stuck with me. He said he had only seen it once before in his lifetime.

And then there was this published paper by Jonathan Kipnis where he explains that he and his team discovered lymphatic drainage vessels in the cranium. They weren’t known about before because when autopsies and dissections were performed, the lymphatic vessels were torn and destroyed because of their fragility. This paper was published in July of 2015; I traded emails with Jonathan in November of 2015. He explained that he doesn’t actually work with humans in clinical trials so he couldn’t help me, but after I connected the dots this week, I emailed him. I’m not sure I’ll hear from him.

Lastly, I have this mast cell activation disease diagnosis from Dr. Afrin. When I saw him in January, he told me that my outrageously high histamine level is probably what is making everything change and grow into scar tissue, including the tumor, as well as the tract along the shunt.

So here’s what I think is happening: Back in 2010 when I first started having the really bad symptoms, the meninges had already turned tough because of my high histamine levels, and the fluid can’t drain properly into the lymphatic drainage vessels like it normally would. That’s why I need shunts. The shitty part is that I’m allergic to the shunts. Just as an aside, this whole time I thought that the underlying cause was an autoimmune disease, but of course I had no idea what it would be.

So what now? That’s the question my mom asked. The tissue that has changed cannot be changed back. There is nothing on the market that I’m not allergic to. I’m at a high risk for aneurysm or stroke. This is going to kill me, there’s just no telling when. I mean really, who else do you know that is going through this? None of my doctors would be able to begin to guess.

Of course, I have to check with my doctors…but again, I’m the one leading them, not the other way around, which is almost always the way it is with rare disease. First I’ll see the neurologist and explain all of this to her, and hand her Dr. Afrin’s notes and Dr. Kipnis’ notes. I’ll see Dr. Afrin in August. After that, I’ll contact my neurosurgeon in Phoenix and roll this past him. I hope that he remembers that I was right about everything that I told him, even though some things took as much as 2.5 years to admit.

So for now I’m still waiting for my disability hearing. I talked to my attorney’s office and they called the person who sets the dates for the hearings, and they were told that hearings were being set for 18-22 months past the appeal filing. My last appeal was filed in February of 2016 (the initial filing was April 2015), so by the time I’m in front of a judge, I’ll have been waiting for nearly 3 years. Every state is different. I can’t get a rush unless I’m homeless, stage IV cancer, a danger to myself, or I have no access to care.

So I wait.  

Retrain My Brain – Gupta Amygdala Retraining Programme Review

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

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

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

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

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

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

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

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

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

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

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

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

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