disability

Sleep and Counting Sheep

Posted on by akiwifreund

What are the two most common symptoms of just about any chronic disease under the sun? Pain and fatigue. Sometimes pain interferes with my sleep, leading to even more fatigue. It’s a never-ending cycle. I jumped on the opportunity to try this product from ProHealth called FibroSleep, because let’s face it – even the best bubble baths, candles, teas and essential oils can’t fix everything every time. Specifically, I was given this product as part of a product review opportunity through the Chronic Illness Network. This item was a gift and I have been encouraged to give an honest opinion and review without any influence by the company. If you have read anything else I’ve written, you know I don’t hold back.

One of the problems that I run into with my additional strange, undiagnosed rare disease is that because of the increased pressure in my cranium, I get anxiety. Sometimes it feels like it comes out of nowhere. Sometimes I can blame it on specific events – like doctors who tell me that I am imagining my symptoms, or that my cluster of symptoms are actually unrelated to each other (even though the majority occur in my brain), or that there’s nothing that can be done and to never come back, etc. About every ten days I will have an entire night pass where my anxiety simply rules my entire body and I cannot fall asleep.

I received this product just in time for a particularly bad run of insomnia thanks to some discouraging appointments:
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I always, always check labels to see what’s going to be invading my body, so here’s the ingredients:
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This particular beef has come up for me before with me and labeling, but I would like to point out that if you have a camera on your phone that has a high pixel setting and can adequately blow up a picture so that you can read tiny writing, you may not see this as a problem. However, if you don’t, and you don’t carry a magnifying glass, you will not be able to read this label and figure out the ingredients. I’ve been told before that it’s a space issue – they simply don’t have enough – but here’s some blank space that’s not being used:
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The size of the capsules are pretty standard:
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I tried the capsules for three nights in a row and nearly gave up completely. I have had previous experience with 5-HTP and melatonin (both included in this product) and figured that it would be a slam-dunk, but anxiety that was prompted by doctors with big egos and closed minds completely overruled any compounds I was consuming, so I got zero sleep. I didn’t even get a weird, loopy feeling that I sometimes get with those two ingredients the morning after.

Which brings me to an important point: with both 5-HTP and melatonin, you will give yourself the best chance at getting good sleep if you cut out ALL light because light messes with your REM patterns. Look around your sleeping area and address all sources of light, including your phone, your laptop/tablet, your router/modem and your TV. Okay, so I just named off everything in my sleeping area – because it’s my bedroom and also my living room since I have a studio apartment. Even my sun therapy lamp has a bright red light that glows when I turn off my room light at night that would otherwise mess with my sleep if I didn’t somehow cover it up (I used black electrical tape).

I put FibroSleep in a drawer for a week and a half and resigned myself to terrible nights (and days) while I struggled with the politics of navigating the good ol’ boys’ club of male doctors. When I felt like I had put enough space between them and me, I tried again. Boy, did I sleep – like a rock. I did have some funky dreams because apparently my brain had a lot to work out. Also, each night I took the FibroSleep I dreamed that I was physically going through the motions of going to the bathroom, which I have learned over the years that that is my own personal signal to wake up pronto because my bladder is full and no joke, IT’S TIME TO GO. It conked me out so fast that I forgot to use the facilities before falling asleep. Most of the times I woke up to use the bathroom I also could not fall back asleep, so I only clocked about 4-5 hours of sleep total. On those nights I was loopy. This is definitely not the fault of FibroSleep. I have always had a hard time falling asleep after waking up to do things like running to the bathroom, so I broke the cardinal rule of not interrupting the sleep so that I could reap the benefits fully. I have always envied those people who can easily go right back to where they left off.

I have had fibromyalgia for about 18 years, and sleep is always a big challenge. Even if you don’t have fibromyalgia but you are like about 70% of the adult population at any given time and you are going through an especially extended and rough patch of chronic insomnia, FibroSleep may be worth checking out. Currently (May 2016) they are offering a 20% discount on FibroSleep orders here: https://www.prohealth.com/shop/product.cfm?product__code=PH311FB&B1=BLGGPH311

Also, if you are interested, they are giving you the opportunity to enter in a chance to win on their giveaway: http://fibrosleep-giveaway-bloggers.instapage.com/

Lastly, ProHealth offers a number of products. They actually have done something quite handy with their site and divided it up by conditions and topics, so you can read articles and shop for products specific to your condition: http://www.ProHealth.com

Pat, I’d Like to Solve the Puzzle — Patient Worthy

Posted on by akiwifreund

One Thursday night, I was completely emotionally wiped out. There was something that went down in my family and I spent that evening on the phone and in tears. I’m not going to go into detail; I feel like it’s not my story to tell. I had as much pep as a wrung-out washcloth. I…

via Pat, I’d Like to Solve the Puzzle — Patient Worthy

Did I Or Didn’t I?

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.

The Saint Paul remarked upon the sheer volume of medicine that he could see displayed in my bedside drawers, something that started with “Wow.” I told him that the one drawer that was open as well as the bottles on the surface were only the half of it and that the other two drawers were filled as well. Of course, I don’t take them all every day; some I keep because I know they might come in handy later. Truly, though, I go through about 45 pills per day thanks to my prescriptions and supplements.

The makers of PillSuite (http://pillsuite.com) were kind enough to send me their product to give it a whirl. I received a sorter, two rolls of sealable baggies and a sealer. 2016-03-27 11.40.02I chose to load up my midday pills, which are only about seven in number but are the largest in volume. When I looked at the sorter, it seemed like the compartments could only handle these seven, and I was right.

The baggies are biodegradable and can be written on with any sort of note you choose to write; I recommend a fine-tip permanent marker.
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After you snap the lid onto the sorter, you flip it over so the funnel lines up into the open end of the next plastic baggie to load up the dosage.
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There was just enough room to get these horse pills into this baggie, just like there was just enough room in the compartment.

Next, the open edge of the baggie is pushed to the back of the sealer and the big button is depressed for 3-5 seconds, which seals the baggie shut with a fine line. The red indicator light shows that the sealer is working its magic and closing off the baggie.
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After that is done, both ends are completely sealed, and your meds and supplements are ready for transportation.

When you are ready to consume them, there is a perforated end that can be easily torn open.
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Here are some advantages to using this product:
1. You bet I like the fact that the baggies are biodegradable! I’m always worried about how much I consume and add to the demise of our resources because it’s not easy for me to do things that able-bodied people take for granted. Check out this episode of In Sickness + In Health podcast (http://www.insicknesspod.com/blog/2016/3/8/23-when-sus).
2. I can write anything I want to on the baggies. I can indicate the medication names and dosages, or I can indicate the time of day the pills should be taken, or I can remind myself to take the contents on an empty stomach an hour before eating, etc.
3. This is a great product for traveling. Sometimes I have appointments that require a lot of time for me to be away from home, and it would be a lot easier to slip one of these baggies in my purse than it would be to take a pill sorter or an actual bottle (or seven) with me. This would be pretty handy for a short trip as well. The only time it wouldn’t work is traveling outside the country; TSA requires medications to be in their original prescription bottles when traveling outside the U.S.
4. This takes the mystery out of whether you have missed dosages or not, especially if you have scripts or supplements that are taken 3-4 times a day or you have to stagger everything according to a full versus an empty stomach. I have yet to see a pill sorter that has enough compartments for all of my dosages.

One disadvantage for me? My evening dose of meds and supplements actually adds up to about 25-30 pills and capsules – the seven that you see here, plus a bunch more, depending on how I am feeling. I would actually have to fill two compartments in the sorter and therefore two baggies for the nighttime dosages.

Ordering additional “suites” as the baggies are called is impressively inexpensive from http://store.pillsuite.com/.

Ch-Ch-Ch-Changes

Posted on by akiwifreund

I’ve been laying low for a few weeks. Actually, that isn’t quite right – I’ve had to put on makeup nearly every day and wear a bra and be polite and make sure my pants aren’t falling off of my ass every time my name is called and I stand up because of non-stop appointments and activities. Most of the time it’s exhausting because my brain is being smushed like people have sent over a few of their puppy-monkey-babies to sit on my head and bounce around a little. At the end of each day I’ve had very little energy to do much else than watch my TV boyfriends Jimmy Fallon, Trevor Noah and Larry Wilmore on Hulu.

My uncle’s memorial service was Monday. There was quite a large turnout – something in the neighborhood of 300 people, I think. It was lovely and sad, and especially tough to see pictures of my aunt and my dad on the slideshow that was run during the service, who preceded my uncle in death by 20 years. Every single one of us cousins on that side lost a parent at a very young age. Thankfully there were a few funny stories and pictures to break up the sadness.

About a month ago I went to a session at a health crisis center where a musician brought his guitar and we had a little singalong activity. It was nice to sing – it’s one of my favorite things to do – and I have a decent voice, and I met a woman who seemed to be fairly friendly. The thing about the crisis center is that people attend whether they have physical illnesses, mental illnesses, or both; this woman happens to have mental illnesses, though I didn’t know it when she started talking to me. She gave me her number and said she would be interested in getting together because she wanted to expand her friendship circle.

Well, I didn’t know it at the time, but “expand” really meant that she wanted to make A friend. One. Me.

I had new orders put in for nerve impingements in both my left shoulder and right hip, so I’m going to PT twice a week now. Besides that I have other appointments for counseling or additional doctor appointments at least once a week, including an EMG for my head and face tomorrow morning. I’ve still got the tremors going on in my legs from being upright so much.

I didn’t realize that the lady didn’t fully expect me to actually call her, or that I was the only one polite enough to give her the time of day. However, slowly as she cornered me on the phone day after day for a few hours at a time, she revealed she had some issues with obsession and stalking, including the fact that a man who attends her church has a restraining order out on her. At one point she told me that she thought that he was trying to be friends again; what did I think? I told her that he might have been polite, but she should keep her distance. I finally told her that I can’t talk on the phone every day. Now she texts me every day and asks if we can go and do stuff like shopping. I tell her every day that I have appointments and it’s really difficult for me to be running around all of the time. Now I’m at the point where I’m going to have to be firm and tell her that I just don’t have the energy or health to be her one and only friend. I’ll let y’all know if I come home to some rabbit stew and her standing in my bathtub with a knife.

I have been working on making the changes to my diet to make it anti-inflammatory, and that includes experimenting with ingredients. Today I made crispy chicken, which was breaded with garbanzo and fava bean flour (okay) and coconut flour brownies (eh), and I’ve determined that coconut flour and my esophagus do not mix. I’ve tried three different recipes that are coconut flour-based and they burn going down every time. I don’t think it’s a true allergy because I don’t get hives or asthma, but it’s still unpleasant enough to stop trying to make it work.

Four doctors now at the University of Minnesota have told me that they don’t think I have late stage Lyme, and they’re not quite sure what I have. No one can figure out why the hell I can lay down and make the CSF move away from wherever it’s pressing on my brain and I can open my eyes again. I talked to my PCP today about the possibility of getting my shunt removed completely since it’s not draining properly anyway and it’s just causing me pain now. It will probably be another six months before I will be able to go under the knife for that one since I first have to jump through the hoops for the pain doctor. I finally got the letter for the NIH Rare Diseases unit from my PCP and started that process tonight. Now I’m back on the rare disease boat.

Last, and most exciting:

I am no longer on OKCupid. I mean, yeah, sure, I was getting some really nutty stories to pass along (and I certainly haven’t told them all yet), but it’s because The Saint Paul really is worth it. The Saint Paul is close to my age, never married, no children, heart of gold, helpful, accommodating, matching sense of humor, curious, well-read and liberal. He supports my feminist stances and most importantly does not view my body as “his” space, as so many men still do with women. We had the best first through fifth dates, the last one involving him taking me to his favorite animal shelter so I could pet kitties. (I brought a shirt in a plastic baggie that I could change into so I wouldn’t contaminate my jacket on the way home.)

Stay tuned for further developments on the love front.

But I’m A Nice Guy

Posted on by akiwifreund

I have grown to dread this self-proclamation: “But I’m a nice guy.” In fact, I have grown to develop a specific distaste for OKCupid profiles that are like “Niceguy4U” and “niceguy69” and “goodguy98787.”

Why? Well, if someone has to keep telling others that he is “nice” or “good,” it’s likely he’s not. The key is to get past the words and watch the actions. 

For about a week I was chatting back and forth with a guy who claimed he wanted a real relationship. His screen name was something like “Love4You” – red flag right there. We messaged for a few days and then he asked if we could text, so I agreed and gave him my phone number. Then he asked if we could get on the phone, so we chatted that way. He told me it was really great to talk to me, and that he felt at ease with me, and that thinking about me and our conversation made him smile. I thought he was really friendly and enjoyed our conversation too.

We made a date for last Saturday, but it fell through because he had to have work done on his truck. He suggested we make a date for the next Saturday. Between that afternoon and this evening, we spoke on the phone a few times, and we texted multiple times each day. Mr. Nice Guy said that he wasn’t interested in sexting at all. I told him that I thought that was refreshing. I also told him – multiple times – that I don’t want to talk about anything like that until after we met, because it puts unrealistic expectations on us when we do meet for the first time. He agreed and told me he was much more interested in sharing his life with someone – specifically, me – and he was already talking future plans, like what he was going to cook for me and where we could go, even with my physical challenges.

Again, through all of this, Mr. Nice Guy repeatedly told me that he liked my sense of humor and that he smiled when he thought of me. He told me that I had a very positive attitude. I told him that I was looking forward to our date on Saturday. He said he was too, that he thought we’d have a great time.

Another red flag: On Tuesday (Super Tuesday for voting!), I got a message from Mr. Nice Guy saying, “Can we meet Sunday instead of Saturday? Busy day.” I told him that would work for me, and he thanked me. This was the second time in less than a week that he changed the date.

We had gotten into the habit of saying good night every night. On this particular night, I told him sweet dreams, and asked him what he would like to dream about that night. Mr. Nice Guy answered, “You.” I said, “Thank you. Where would you like to go in your dream?” He said, “In my dream with you?” I said, “Yes. Pick a place and we’ll go there. I’ll see you in your dreams.” He said, “In bed.”

I didn’t see this right away because I was still trying to change for bed as well as wash my face and brush and floss, so he noticed the big pause and said, “Too direct?” When I saw his messages, I said, “Didn’t we say we weren’t going to go there at this point?” He said, “Yes very sorry.” I said, “I just don’t want to jump the gun.” Mr. Nice Guy said, “That sounds good to me. Falling asleep” and he ended his text with a very enthusiastic smiley face. The trouble is, he didn’t go to bed. OKCupid showed him logged into the system until 9:40 pm, later than our interaction. That reeks of looking for a piece of ass, in my book.

The next evening I sent Mr. Nice Guy a text greeting him by name and asked him how his day was. He answered, “Very busy. Had a 5 minute lunch. Stayed 45 minutes on overtime. Gonna get much more busy.” And then he said, “Good night” – at 7:45 pm. You bet your sweet ass he was logged on for a few more hours on OKCupid.

Then at 6:05 pm tonight, I got a message that said, “I met someone. Good luck in your seach” (bad spelling included).  How did I respond? “Nice.” How did I want to respond? “You’re a dick” would have been appropo; so would have “You’re a fraud.” I mean, for someone turning 50 in a month, you would think he would have the manners and integrity to be truthful with me and call me instead of texting this ridiculous made-up story. I am pretty sure that’s why he’s still single.

I have his number and messages blocked on my phone and I blocked him from seeing my profile or messaging me on OKC. However, I can still see his, and he was logged on for three and a half hours this evening. With as quickly as he wanted to move to chatting on the phone, Mr. Nice Guy’s claim that he met someone is obviously false because he’s still trying to hook up with someone.

A couple things could be happening here:

1) Mr. Nice Guy really does just want sex and is not interested in a relationship;
2) Mr. Nice Guy is still married;
3) Mr. Nice Guy is embarrassed that I turned him down;
4) Mr. Nice Guy is pissed that I turned him down.

Whatever the reason, that’s one less man-child for me to raise. Mr. Nice Guy isn’t so nice after all.

 

Now You See Me

Posted on by akiwifreund

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis

Don’t Ever Think ‘Equality’ Is A Dirty Word

Posted on by akiwifreund

We need women (and MEN) from all walks of life, from all occupations, from all age groups, to get on the bandwagon with the idea that equality is worth it. Already my nephews, aged 10 and 6, have started reciting the ugly words, “Boys are smarter than girls.” They certainly didn’t learn that from me or their parents. Now our work is even harder with trying to turn that thought process around (if it is even a process – because they are more parrots at that age than scholars).

I want all girls and boys to grow up to appreciate differences while embracing each other for their value as human beings first.

I want women to receive equal pay for equal work.

I want men to stop claiming all space as their own, including women’s bodies.

I want women to be supportive, rather than see each other as competition to be beat.

But in addition to that:

I want people who are labeled “disabled” to be out in the work force (if they are able) and have a social life filled with inclusion, and to be portrayed correctly in advertising, TV and movies.

I want “inspiration porn” to end.

I want the freedom to practice – or NOT practice – any and every religion of my choosing.

I want churches to start paying taxes.

I want people of ALL races to be valued, truly, but I want privilege to be acknowledged and then driven to extinction.

I want our actions to match our words.

I want choices, whether it’s the company I keep, the job that pays the bills, the food I put in my body, the chemicals I keep away from my dwelling and the doctors I see. The more we work towards total inclusion, the better our lives will feel, period.

http://www.huffingtonpost.com/entry/jennifer-lawrence-feminism-equal-pay_us_56d08bfee4b03260bf769e58?

Dude, You’re Stepping On My Personal Space

Posted on by akiwifreund

I wrote this article for Patient Worthy on February 14th; since that day I got daily (sometimes twice daily) texts from this guy saying, “Good morning cutie” or “sweet dreams cutie.” The most recent ones – because he still won’t stop – say “Just got to my hotel” and “How are you?” For the life of me, I can’t figure out why he would bait me with the hotel remark because that one really came out of the blue. I haven’t traded texts with him since February 10th. Was the hotel text his clumsy attempt at a booty call? Or was it not intended for me, and instead should have gone to whomever was playing the part of his dirty little secret?

Dude, just…stop.

Boundary Waters and Dating Boundaries

Senior Hours

Posted on by akiwifreund

I fell asleep last night somewhere between 8 and 10 pm, and that is as close of a window as I can get. As I said to one of my short bus drivers this week, it used to be a sign of weakness or a lack of social life if I ever changed to pajamas before midnight; now I think it’s a late night if I’m not comfy by 9:45 pm.

I’m turning into my parents. Maybe I even skipped a generation and went straight to my grandparents.

The trade-off is that I’m also not sleeping long or late. Most mornings now I wake up in agony at around 3 am because my right hip is burning (not at all fibromyalgia pain, so I’m thinking it’s the Lyme), or my left shoulder is angry. I had to sleep on my left side for three years because all of my surgeries used to be done on my right side, so I’ve got a nerve impingement that I’ve had to do shoulder rehab for twice already in four years. It’s not responding to the exercises I have memorized and it’s now doing a weird thing like it’s popping out of and then back into socket. I finally broke down and called my primary care doctor’s office yesterday to get set up with PT and pain management.

As I hunker down in the early morning with my cough drops and water and browse through my WP Reader, a thought strikes me: I no longer think in poetry. I can no longer bear to read poetry.

I think pain has rewired me so that I avoid the most descriptive and flowery words, or think of the significance of pauses and stanzas. I am in the economy car. I want the most efficient features possible for my money (aka time). I want to get in and get out.

And I want people to rethink their use of commas.

I hope that when I’m not being driven by pain, I can return to the imagery and thoughtfulness of poetry, because I know there is some fabulous stuff being put out there for all to read. I don’t want to forever close the door on that appreciation. (However, my stance on the proper usage of commas will never change.)

When Life Hands You Lemons

Posted on by akiwifreund

Another article has been posted on Patient Worthy! The picture is of lemons from my tree in Phoenix, something I dearly miss. My body is rebelling and my dates are in retrograde. Where’s my unicorn??

Hello Tremors, My Old Friend