travel

We’re Not Friends

Posted on by akiwifreund

I’m here in Arizona now. This is the most disjointed move I’ve ever done. The movers came to pick up all of my boxes (and very small amount of furniture – two little filing cabinets, two compact bedside tables and my super ugly but very functional hospital bed) on June 27th. I flew out to Phoenix from St. Paul on June 29th on the hottest and most humid day in Minnesota – 100 degrees. I was giving away some drawer units to my parents for their newly-constructed garage, and we had to tear them down completely to fit them in their trunk as well as my suitcases, my parents, my nephews and I for our detour to drop me at the airport. It feels like ages ago.

Thank goodness my old landlord left the little air conditioning unit that I had previously installed that a prior tenant had left behind, or we would have been in big trouble, because that apartment didn’t come with air conditioning. I had a POTS episode from being outside in the heat and humidity and trying to help Dad with loading the car. When I came back in for the final run, I was shaking badly and was nauseated, and couldn’t really answer my mom when she asked if I was okay. I had to get going though because Dad was still waiting outside for us, so I took a few seconds to change shirts and wipe the sweat off of my head and wig and reassemble myself, and away we went.

They dropped me at the curb to check in and get my wheelchair, and my nephews, aged 12 and 9, hugged me twice and cried. Well, we all cried. Then it was time to fight my way through Friday afternoon security. They didn’t give me the option to go through in the wheelchair so I had to walk and get a full pat down because the security scanner doesn’t like spandex. I finally got settled back in my wheelchair and since I was at my gate pretty early, I decided to read through my insurance documents.

Imagine my surprise when a few hours later, I glanced up and recognized the profile of a person who approached the podium to ask if she was at the correct gate. The exchange went something like this:
Her: “Excuse me, am I at the right gate? The flight time says 6:25, but this display says 6:45, so I don’t think I’m at the right gate.”
Employee: “Yes, you’re at the right gate. It’s still the same flight number and city. We’re just delayed by 20 minutes.”
Her: “Oh, okay. I just wasn’t sure because it totally wasn’t the right time.”
Employee: “It’s still the correct flight. You’ll make up some of the delay in the air going to Phoenix.”
Her: “Okay, I just wanted to be sure.”

I recognized her profile before her voice, but those questions were definitely typical. I have wondered over the decade that we have known each other how she has managed to safely leave her house sometimes. What made me instantly freeze and try to hide my half-paralyzed face with my hair was the fact that I had told her to go fuck herself just a few months earlier. Of all of the days I could have traveled and of all of the days she could have traveled, and of all of the cities she could have flown into and out of, and out of all of the airlines to choose from, this was the day and location she picked. Jesus fucking Christ.

When I visited Phoenix last October, I had made plans months in advance to stay with her a few days (because she is one of only a few friends who doesn’t have animals). However, a month before I visited, she became sick and told me not to call or text her. So I made plans NOT to stay with her. While I was there, I offered to visit for a few hours and wear a vogmask so I didn’t catch what she had – which by the way was a very nasty pneumonia that she didn’t immediately kick – and she turned me down. Then she sent me text messages telling me that I was a horrible friend for not staying with her, and “next time” she was going to just keep her personal business to herself. (Usually she saves that last bit for when someone gossips about her. I wasn’t gossiping. I just can’t stay with her because I was born with a compromised immune system, and now I’m on weekly injections that reduce it even further. Something like that could and would kill me.)

In May, she sent me messages saying that she knew I was moving down, and she wanted to know where and when. I hadn’t told her anything. She doesn’t know any of my other friends, save one whom she hasn’t talked to in years. I don’t know where the info came from, but at this point, I don’t care. It’s manipulative and it’s something that she does to feel superior. When I told her that I didn’t want to continue staying in touch because she was so shitty to me, she claimed she didn’t remember saying anything to me. Of course, I have it all in writing, so it’s not my imagination.

That mutual friend asked if I missed being friends with her. My answer? Only when I forget how bat shit crazy she is. I don’t like being manipulated. I told her to fix herself, and I stand by that. (Not that I’m perfect by any stretch of the imagination, but I also don’t claim to have never told someone not to call or text me, and then told them they are a horrible friend for not calling or texting me.)

Now that I’m in Phoenix, I’m a little nervous about being disabled and not being able to get away quickly if I do encounter someone I would rather avoid. That one is a good example. Another one is the former friend who tried to force himself on a mutual friend, and told me that I was crying about my sister and my friend dying 10 days apart just for sympathy. And oh, the ex-boyfriends. One in particular is Drummer #2, who was also controlling, manipulative and violent. I’m almost certain he still lives 2 miles down the road from where I am temporarily staying.

I think this is a good year for purging and starting new. I got rid of a lot of old furniture. I’m going to sever relationships that are unhealthy as well, as sad as that is, especially with friends who have been attached for so long.

Now if I could just solve the mystery of when the stuff I am keeping is actually going to arrive on the moving truck…

Invigorate Is Code For Instant Relief – Product Review

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.

This product I’m writing about today is the Invigorate pain-relieving lotion that has been formulated by the Resonant Botanicals company. They indicate that their ingredients include essential oils such as frankincense, sandalwood, lavender, bergamot, Bulgarian rose and orange to make the lotion smell pleasant. Then they compound various oils to make it easy to both apply and absorb. Last, they add magnesium and methyl sulfonyl methane (MSM) for painkilling properties. What comes out of the bottle looks like this:
20171018_092718As they have specifically stated, they wanted to make a product that both absorbed easily without an oily residue and smells pleasant, and that is definitely what they accomplished. Out of all of the pain lotions I have tried, this has the lightest scent. It also soaks in very quickly. I have never had to worry about waiting any length of time before touching any fabrics after applying the lotion for fear of making any permanent stains.

As luck – or unluck? – would have it, I got a nasty cold that turned into bronchitis two days after I received my bottle of Invigorate. Perfect time to pull out the big guns and really give it a go. The instructions were a little unusual for me: apply the lotion at the location of the pain, but also apply it over your spleen (left lower rib cage – thank you, nursing school anatomy class!). So for about 10 days, when I could remember in my fevered state, I would rub it all over my aching neck and then my spleen. I did notice almost an immediate relief in my neck; I’m not sure if there was any difference with rubbing it over my spleen, so I didn’t make that a priority.

A constant problem for me is the outside tendons running behind my knees. When I wake up in the morning I can barely bend my legs. Outwardly they appear fine, but if anyone could see what I feel, it’s as if someone has inserted marbles into the tendon sheaths. At night the same thing happens; the tendons tighten up and it’s painful to bend my legs or walk. I’ve taken to rubbing the Invigorate lotion into those areas behind and to the sides of my knees, and within minutes the stiffness and pain will ease up enough for me to stop thinking about it. The pain might still be there, but really, it’s just an afterthought, not ruling my every move.

Lastly, I managed to plan my first plane ride since moving back to Minnesota in 2015. Traveling wrecks me. I have to get to the airport early because quite frankly, I never know what to expect. TSA gets all handsy with their pat-down because I have to get wheelchair assistance directly all the way to the gate, and I have a TON of medications including a few injectables that have to be transported with ice packs. (Side note: I wait until I clear security, and then I sling my Darth Vader-like vog mask across my face to keep everyone’s bugs away from my mucous membranes.)

The downside to sitting first in the wheelchair for a few hours and then the plane seat for more hours is that my tailbone area starts to really hurt. I have osteoarthritis in my hips and the head of the femur doesn’t fit properly in the socket, but it’s not the same pain. I swear my coccyx is trying to punch a perfect hole straight through. I stupidly didn’t bring the lotion with me on the trip, but you had better believe it was one of the first things I grabbed when I walked in my front door when I returned. Without it my pain was a hindrance every time I sat on a firm surface for any length of time for about 4 days at the beginning of my trip.  So as soon as I could when I got back, I slapped some Invigorate on that particular spot at the base of my spine, and after just a few minutes could feel it kick in and the pain let go. I’ve had to reapply it a few times because I went to a meeting the next night and was sitting on a hard chair, but it was so much better than what it could have been without that extra assistance from the Invigorate lotion.
20171018_093113-1Quite frankly, I was surprised at how much and how quickly this product worked at mitigating pain. I do have one disclaimer, and that it can’t touch the gnarly abdominal pain in my abdomen from my allergy to the shunt that runs from my brain to my peritoneum – but then again, nothing does, so that’s not a shocker. Invigorate did a pretty good job on my neck when I was sick, on my tailbone area, and I continue to use it on the tendons behind my knees. I would definitely call it a win.

Resonant Botanicals Home Page

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.

Travel Realistically In Your 20’s

Posted on by akiwifreund

I’m a gypsy at heart. Anyone who knows just a portion of my story always asks, “So what brought you to _______?” My answer is always, “Me.” With the exception of this move back to Minnesota to be crazy ill, I have always driven my choices – I never waited for something to be decided for me. If I set my heart on a destination, I went. I moved without knowing a single person at my chosen location. I moved without having ever visited prior. I moved with a bag of clothes, a music collection and an air mattress.

Understand that 20 years after my friend and I took our road trip around the U.S. and camped for a couple of months, the economy was much more stable than it is now. But also, for being 20 years later, the gas prices are hella affordable.

My advice if you decide to move or travel, for what it’s worth, is: 1) Be prepared to live minimally. Decide what is truly essential. Forego your mani/pedi. Pare down your electronic subscriptions. Stop buying more clothes. Don’t go out to eat and instead learn to cook well AND creatively, because that is going to save your ass when money is lean. I have survived for months on $10 a week for groceries. 2) Work multiple jobs. This will give you extra cash to save up (or pay off bills) that will afford you more travel money. It also makes you a MORE VALUABLE employee. People often ask me what I do, and my answers for the past 20 years have always included an “and”: I am an escrow assistant AND box office representative. I’m a software trainer AND a legal proofreader. Again, have a variety of skills, even if it means that you know how to assign seats for a performance at a theater as well as answer phones and direct calls, because that will save your hide. 3) Research the area you are interested in visiting or moving to. Search ads on Roommates.com and Craigslist.com to get an idea of whether rents are affordable in that area AND if there seems to be an abundance of rentals in your price range. If the rent seems steep, everything else is going to be as well. 4) It’s perfectly normal to be afraid. The best way to dial down your fear is to plan and research. 5) Don’t just talk about it, live it!

I can tell you, with all of my heart, that I regretted nothing – even when I had barely enough to pay bills – because I was in charge of my life and my choices.
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I honestly can’t stand all of the articles I read that are like “You’re in your 20’s! Quit your job and open up an ice cream shack in the Bahamas!” or “Don’…

Source: Travel Realistically In Your 20’s