bedbound

Down on the Farm

Posted on by akiwifreund

I have had so much fun being exposed to so many products as part of the Chronic Illness Bloggers network and I’ve been able to give my honest opinion, including this one for the Fay Farm Rejuvenation Lotion. Please note that I received it as a gift and the opinions that I state about this product are my own and are in no way influenced by the company.

First, I’m a good candidate for this product because boy, have I got issues. I’m hanging out in bed for about 20-22 hours every day because when I’m upright, CSF tends to pool around my brain stem, and the pressure is mighty uncomfortable. However, laying in bed for so long comes with its own problems. My fibromyalgia is singing the blues – especially now that in the state of Minnesota and while the sweet corn is growing like crazy, humidity is at its worst (check out this scientific discovery regarding how corn is actually adding to our humidity in this state here).

For about three years I also laid on my left shoulder because all of my shunt surgeries were done medially and on the right side, so my left shoulder has a pretty nasty impingement that hasn’t cleared up with 6 months of physical therapy for the third time. At this point I’m up for trying just about anything to feel better, including sacrificing a chicken and dancing around a fire.

So I’ve got pain all over, and I’ve got this crazy pain in my left shoulder. I’m always looking for ways to take away the pain. The Fay Farm Rejuvenation CBD Lotion is formulated specifically to relieve joint and muscle pain because it contains 200 mg of CBD (cannabidiol) – a product of hemp. I’m not going to get deep into the MJ/hemp debate; however, I’m going to say that I was a legal, card-carrying medical marijuana user while I was a patient in Arizona and my doctors were completely stumped about my horrible allergy to my shunt materials. I went the route of medical marijuana to try to control some of the pain and I learned about CBDs and how they are extracted from hemp plants at certain temperatures much different from THC, and also are not “psychoactive” like THC. In other words, CBDs are pain killers but they are not going to make you high.

Here’s what the lovely bottle of The Fay Farm Rejuvenation Lotion looks like (and you can tell I’ve used it):
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Here’s what it looks like straight out of the bottle, it has a slight green hue:
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Fay Farm recommends that this lotion be used for any body parts where fast absorption is desired. I agree! This is a lotion that is non-greasy and absorbs quickly; the base includes hemp oil, apricot oil, grape seed oil, apricot kernel oil, white sesame oil and jojoba oil, and you would think that with the combination of all of those oils that it would be, well, oily, but it’s not. When I apply a dime-sized squirt to my bad shoulder, it only takes about five circles before it’s absorbed.

It’s not just my shoulder that needs attention. Sometimes the tendons at the outside of my knees become tender. Don’t ask me why – I have a lot of theories but I’m sure I’ll never know the real reason. But I’ve been putting some of the Rejuvenation Lotion there too. And of course if I’ve had to do a lot of walking and standing because of physical therapy, I’ll put the lotion on my feet when I get home. Every once in a while I’ll put the lotion on the tendons that lead to the base of my skull (pretty easy for me to do since I am completely bald – no hair to contend with).

The company has described the scent as a decadent vanilla with a hint of camphor. I’m pretty sensitive to scent, and honestly, I don’t know if I would describe it that way. To me, it smells more “green” than anything and I don’t smell vanilla at all. In any case, it’s not a strong scent and should not overwhelm any of its wearers. Also, this lotion should not replace a good ol’ moisturizing lotion – keep using that chemical-free daily moisturizing lotion (trust me, look up ingredients and products on the Environmental Working Group database: Skin Deep) and get smarter about what you are putting in/on your body.

How effective is it? I would describe this lotion as being gentle and subtle. In other words, the relief I felt was not sudden and shocking; it was more like, “Oh, that part isn’t hurting right now.” It seemed like the effects lasted for about two-three hours. Because I got relief from it, I have continued to use it. It’s that simple. The chickens are safe for now.

Feel free to check out all of their products through the Canna Treehouse website.

If you are interested in this product in particular, you can visit this page directly.

Dear Mr. President

Posted on by akiwifreund

I figure I have nothing to lose.

It will be a few months until all of my dental work is completed. I am pretty sure that the one tooth that has a “catastrophic” crack is going to be a complete loss, and I’m going to have to spring for an implant (or a partial plate/denture). I’m not allowed to have pain pills – not because I’m not suffering, because clearly I am, but because the FDA and the CDC has decided it’s a good idea to regulate me, rather than try to treat addicts. So I’m stuck eating scrambled eggs and applesauce and rice because I’ve cracked all of my teeth because I’m in pain.
The NIH/Vanderbilt has turned me away with a final diagnosis that is a complete misdiagnosis, so now I’m down to a PCP who will only write me prescriptions for my cholesterol meds. I might have the mast cell disease doctor, I might not. That’s up for debate.

So I wrote a letter to the President.

That’s right. Not that I expect Barry, a single digit midget with only months left in office, to be able to do much about it, but overall, I think those of us who are applying for or who have received disability really get the short end of the stick every time. Here’s what I asked for:

1) Common sense from the people who determine disability. I cannot believe how many times I have heard directly from people who say they have been turned down for disability because they have been paralyzed. One person was a paraplegic and their only way to ambulate was to blow into a straw on their customized wheelchair. THAT PERSON WAS TURNED DOWN FOR DISABILITY. Unless the SSA can prove that the vast majority of the U.S. population ambulates by blowing into a straw on their customized wheelchairs, I think this person should be considered disabled. Likewise, if I have to lay for 20-22 hours a day to keep the pressure off of my brain, common sense should tell my determiner that I am disabled, unless the majority of the U.S. population travels to work on a bed. THEY DON’T. Yet here I am, being told that there’s no way anything is wrong with me. By the way, it’s not just my physical limitations that determine my disability (silly me for thinking that); it’s my age and education too, and since I’m college-educated, there’s a higher chance of me finding some job to support myself – more so than someone with just a high school education, even if it’s a physical labor job that requires only a high school diploma. One guy was told that he can fold napkins, so he was denied disability. If anyone knows of a job where the only duty is to fold napkins and you can pay all your bills and eat too, hey, let me know, I will fold the shit out of those napkins…from my bed.

2. The time to process a disability case is appalling. I was told it “wasn’t unreasonable” to have to wait two years to be assigned a hearing to determine disability. If I can’t work and I don’t have any source of money coming in to pay for basic needs like rent and groceries, how is this reasonable? Not everyone has relatives that they can live with.

3. Accountability. I told President Obama that it’s incredible to me that I have to resort to writing to him or to daytime talk shows or to local TV stations with the hope that someone will find my story interesting enough to want to “rescue” me. But what about the thousands of people like me who don’t get that chance? Why should only one person win the lottery? Why are only some people worth the money and effort?

In closing, I acknowledged that my letter could be completely pointless if Trump is the President Elect. We all know how he hates disabled people…and people of color…and women…and poor people…and foreign people except for his wives (that he later cheated on)…

Happy Anniversary

Posted on by akiwifreund

Exactly one year ago today I got on a plane and moved from Phoenix to St. Paul. According to the dust on my shelves, that’s the last time I dusted as well.

The first six months were difficult. I was going from doctor to doctor, trying to find any that wouldn’t turn me away. I couldn’t drive because I lose about 80% of my vision while I’m upright for a long time, so I spent about $500 a month just on cab fare alone; when I wasn’t going to doctor appointments, I simply stayed in my apartment.

It took me a lot to where I am right now: I have at least a primary care doctor, I have had 3 months of physical therapy for the pinched nerves in my shoulder and hips, I have a disability attorney (but probably no hearing until July or later 2017), and I now use the short bus and a cab company that is contracted through medical assistance to get me to appointments. I also have an incredibly supportive boyfriend.

There are still some black holes of missing pieces. One: I still don’t have a diagnosis. Two: I don’t know what in the hell I’m going to do about my shunt.

June 16-19 was the National Hydrocephalus Association conference, and I never would have been able to attend if it wasn’t right here in my back yard. I had decided that I was not going to be shy. I had also decided that although it was nice to meet other patients and commiserate, I really, really wanted to pick the brains of the researchers and doctors and manufacturers of the shunts.

At the very first speaking presentation, a researcher spoke about the work she has been performing regarding shunt occlusions (blockages). I raised my hand and first asked if the study began when the shunt was still in the patient (so they could figure out if the drainage tip was stuck somewhere, like a drinking straw that’s clogged by a large piece of fruit or an extra thick shake) or if the shunts were studied after they were removed, because I tend to immediately make 20 years worth of scar tissue in 2-3 weeks and clog my shunts very quickly. She indicated that she tests the shunts only after they are sent to her post-surgery, and that she was definitely interested in my shunt(s). I got her business card and told her about imaging that has been developed in Scotland that piggybacks off of current MRI and CT scans but is supposed to be much more accurate, and it just so happens that she is supposed to travel to Scotland in two weeks. In another talk she gave much later in the conference, she mentioned autoimmune diseases, and I’ll be seeing a doctor that specializes in mast cell disorders next week; I’m going to speak to him specifically about my issues with the shunts and about contacting her and speaking with her regarding shunt rejection. Not a bad start for networking!

But with the good comes the not so good. Another talk I attended was facilitated by a neurologist and a neurosurgeon who were experts in normal pressure hydrocephalus. That is one of my placeholder diagnoses and they kept talking about enlarged ventricles on MRI and CT scans. I asked if it was possible to get that diagnosis without the enlarged ventricles, and they said no. I talked to them afterwards and quickly covered my symptoms and demonstrated my unusual ability to move the fluid around in my brain. They actually became very condescending and a little pissy, asking if I had considered the Mayo. I thanked them and left the room.

At another session, there was a representative from the Social Security office talking about the process of filing for disability. He opened the session by saying that he actually never handled disability cases where health was involved – I mean, when it’s a health conference, why send someone who is knowledgeable? I raised my hand during this one too and asked two questions: 1) Is it correct that since my request for a hearing was filed in early February of 2016, it’s pretty backed up and I shouldn’t expect a hearing to be set until July or August of 2017? and 2) I was told that even though I can’t see well, that my arms and hands still work, so I should be able to get a job. What criteria is used to determine whether I should be employed when my records indicate I should be laying down for 20-22 hours a day? He said, 1) It’s not unreasonable that the hearing would take that long to be set (and I answered that maybe it’s not unreasonable to him, but it’s unreasonable to me), and 2) It’s not just my inability to see or be upright that’s considered, but also my education and my age, so yes, no matter how impaired I am, I may be “too young” to be disabled. That absolutely floored me – no wonder I have to fend off assholes telling me that every day, because that’s the idiocy that the social security office perpetuates every single day.

One session was put on by the Metropolitan Center for Independent Living right here in Minnesota and a particularly energetic and passionate woman dedicated to helping people find the best and most resources available. Of course I raised my hand and said something to the effect of, “Dude from the SSA yesterday said that even though I am impaired when I’m upright, I can still use my hands and arms and I’m only 42, so of course I’m going to be denied. Does this seem correct to you, and would you deem needing to lay down flat 20-22 hours a day a ‘reasonable accommodation’ to request of a workplace?” (In other words, can I lay on a hospital gurney while I’m ringing people out as a cashier at Target?) She rolled her eyes and said that she was told a while ago that when dealing with the SSA, never to apply logic, because what they do defies common sense. She also said that one guy was told by the SSA that he should be able to find a livable wage somewhere “folding napkins” because that was all he was capable of. I asked if there was ever any communication between the SSA and her office for them to base their findings off of, and she said absolutely not.
While we were waiting to be picked up by the short bus at the hotel in downtown Minneapolis where the conference was taking place, there were plenty of people partying and women wearing the most ridiculous heels and short skirts because the Twins were playing the Yankees at a home game. One drunk hanging with his two very drunk buddies began to loudly read my shirt, and so rather than roll my eyes and be pissed, I invited him to read the other side of my shirt. His immediate demeanor took on the tone that he was going to make fun of me, but after I gave him a brief history, all he could say was that he was sorry, and he doffed his hat to me.

Through all of this, The Saint Paul weathered some really dry presentations, and probably learned more than he ever wanted to. However, when I met his dad and stepmom for the first time on Sunday night and they began to ask me questions about my health, he answered them exactly as I would have. The Saint Paul really takes all of this to heart in addition to reminding me that we are a team and that I no longer have to do everything on my own. I mean, man, he got me paper towels because he noticed I was running low on his own – he didn’t even have to ask, and I didn’t have to tell him! Forget “don’t sweat the small stuff” because it’s the small stuff that counts!

One of the sessions I wanted him to attend (while I was in listening to a much heavier topic) was about caring for the caregiver. All of the men in my immediate family have had to put their own health and happiness on hold because my mom and sisters have had chronic and severe diseases. The Saint Paul believes he can handle whatever happens to me, but I warned him that things can change suddenly and completely and permanently for either he or I, and even with the best of intentions, it’s absolutely possible that he can be so deeply affected by this unnamed change that he’s going to lose his shit. It’s a lot to ask of one person.

So, back to this anniversary: this is also the day a year ago that my sister and her husband brought home their second rescue dog from Secondhand Hounds and renamed her June. Just recently, June has started to mimic her dog brother and put herself on the floor and position herself for belly rubs, something she never would have been relaxed enough to do a year ago. It’s amazing what thousands of dog treats and a loving family will do.
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The Boyfriend Invasion

Posted on by akiwifreund

The Saint Paul and I have been dating for two and a half months now. Our first date was many hours long, so many that we approximated it to be the equivalent of four dates. We’ve had many dates since then where we’ve had up to fourteen hours together until I’m physically holding my eyelids up with my fingers and he’s stumbling into his shoes to go home. We’ve also fallen into the habit of not going more than three days without seeing each other. But we’ve never had a full-on sleep-over; he’s always gone home.

I live in a historic area of St. Paul, Minnesota, and every year on the first Sunday of June there is a celebration called Grand Old Days that includes music, food vendors, a parade, artists and sports/health vendors. Attendance has been anywhere between 170,000 and 270,000, and attendees can even print a bus pass for certain routes to park and ride to this area for free. It has gotten so large that this year they have expanded the festival to the whole weekend instead of just Sunday. My flat just happens to be right next to one of the sound stages – and I’ve checked the lineup, doesn’t look promising.

Healthy me would have been absolutely thrilled. This is the stuff I used to live for, and it’s right at my front door. But the new me has to come to terms with the fact that I can’t walk a couple of miles or stand for hours to listen to live music or spend money on food and pottery. The thought of trying to navigate throngs of people while my brain is being squeezed and my eyes are drooping gives me extra anxiety. If I’m being completely honest I can whine and say that it’s not fair, but then who in the world can I blame that on?

The Saint Paul has opted to come over Friday night so he can score a parking spot and not have to stress about it after that. We might run out to get a few groceries, which will require us planning out meals for two whole days together, and then he’ll head home Sunday night. He’s going to try to borrow a camp chair for the parade, since I have my own already – we have to stake out a place on the sidewalk along the parade route pretty early in the morning Sunday, because it’s going to get gnarly. We’re fully expecting drunks to be trying to get into my building or to be peeing in our planters or every barfing in every doorway. I’ve heard stories. Non-food businesses are now in the habit of shutting down completely for this festival.

Other things take planning too. I’ve suggested that he bring over his favorite pillow to help him sleep better (because we all know that makes a huge difference when sleeping in unfamiliar territory). Sometimes I wake up coughing because of acid reflux, so I kind of have to be ready to move to my couch (five steps from my bed) if I think I can’t get back to sleep right away. And to hear The Saint Paul tell it, he flops around like a fish when he sleeps, which does not bode well for me, the ultimate light sleeper.

Most importantly, 48 hours together guarantees that there is going to be poo involved. Knowing my GI tract means there’s going to be multiple incidents each day. I have a brand new bottle coming that should be arriving just in time for Friday that is ruby red grapefruit-scented that may prolong my relationship with The Saint Paul. I am telling you, every house should have PooPourri because everyone poops, and no one wants to die by Lysol or any other chemical stuff that you spray in the air that makes it smell like you shit out a pine tree. I cannot say enough good things about this product. Buy it. You spritz it in the toilet bowl before you unload your load, and all is right in the world.

Lastly, most of my lounging and sleeping when I am solo in my flat is done sans hair. My wigs are just not at all comfortable, and wearing them in bed actually wrecks the fibers. So The Saint Paul is going to get a full dose of me au natural, and I have warned him that once I have taken them off in his presence, I will probably lose all motivation to wear them all of the time. I like how I look in them, but they are so damned scratchy and uncomfortable, plus wearing them less will also help me to be able to keep them longer since I have no money coming in. So for your viewing pleasure, here is (a very dirty) Mr. Clean taking your day to a whole different level:

Just The Tip

Posted on by akiwifreund

For the life of me, I cannot remember who worked this joke into their standup (though I could have sworn it was Eddie Murphy or someone else who was quite popular in the mid-80’s). The premise is something along the lines about said comic complaining about how when it came time for him to get a blow job, his dates were less than enthusiastic. They grabbed his penis like a microphone, gave the tip a lick or two like a lollipop, and then looked at him with expectation and asked, “You good now? That okay?” That counted as oral sex in their minds. Their mouths came in close contact with the comic’s junk, so good enough. I mean, there’s nothing more intimate than having your face in someone else’s parts and getting a close-up inspection, is there? He should have just been thankful that he got a couple of licks because that’s all he was gonna get.

I bring this up because this routine is always what goes through my mind whenever I interact with a friend or family member who checks on my status:

Friend: How are you?
Me: I’m still having health problems.
Friend: So you’re better now?
Me: No, I’m actually worse now.
Friend: Oh, but you’re better now, right?
Me: Not at all.
Friend: Okay, we good now? Stay positive!

So, are we good? Well, no, actually. Especially since I have this conversation multiple times a day with people who don’t have any connection to each other, and I am at a loss as to why this keeps repeating. When I try to get to the bottom of how they could have possibly come to that conclusion that I’m okay, I realize that it has to do with lip service every time. They want to brag that they went down on me without actually having done it.

Since I’ve vowed to live an authentic life and not fake my orgasms, I am being truthful when people are asking me about my current status. It’s making them uncomfortable but I’ve decided not to apologize for it. As we enter the summer months and the air pressure, humidity and temperature jump around hourly and the pressure in my head goes haywire, I will struggle more. No amount of wishing for rainbows and puppy dogs will change it.

Would You Like Some Abject Poverty With That?

Posted on by akiwifreund

I left a message yesterday with my apartment manager regarding my lease, which is ending on May 31st. I had signed a notice and turned it in on March 17th indicating that I wished to stay another year when my lease expired, but I haven’t heard anything since then, and we don’t have many days left until the end of this month. I have a certain amount of money in my bank account from the sale of my car that I have been using for living expenses but I figured that if I was going to sign another lease, the apartment manager wanted to see proof of income or a certain amount of reserves in the bank, so I decided to call the administrators of my 401k to pull all of the funds and close it out.

The simple act of getting on the phone causes me anxiety. In all of the jobs I’ve held over the years, I used to field anywhere between 50-100 calls a day, so just know that that’s highly unusual for me to dread picking up the phone and try to figure out what to say without fumbling.

It’s also unusual for me to not have one or two or three jobs simultaneously. The 401k is my last lifeline and the only thing standing between me and homelessness. Right now I have to operate under the assumption that I will never have any money coming in ever again because I have no idea what the outcome of my disability hearing will be in 2017.

The call to the 401k plan administrators only took a few minutes. The first representative couldn’t confirm or deny which penalties I would be subject to, even though my CPA said that I could probably avoid a 25% and 10% early withdrawal penalties because of my indefinite disability status. A second rep – presumably the guy who did the calculations and released the funds – advised me that he had to take out a minimum of 20% for taxes and that I should set aside an additional 10% for penalties, all in a blaring and bored voice, as if he heard this stuff all the time, as if it wasn’t a big deal for me to have no other choice.
I have a few big purchases coming up. First, I have to take care of a crown and root canal completely out of pocket because medical assistance won’t pay for any of it. Second, I need a new bed; this one started to sag about five months after I purchased it last year because I spent so much time in it, but the store wouldn’t cover it under warranty because I moved out of state and the manufacturer would only cover a small percentage (this time around I’m going for the bargain Sleep Number C2 – no inner springs and it costs the same as a traditional inner spring bed). Third, I want to buy a different a/c window unit because the one that was provided with the apartment is gross and inefficient.

After those purchases, I will have to live off of the same amount of money slightly more than what workers make at minimum wage in the U.S. I don’t know how people do it. I don’t know how I’m going to do it. It’s not like I can go out and get more jobs, or a better job.

This is the song of our people. Poverty. Desperation as our bodies shut down, especially in my case (and others out there) when I don’t have a name to attach to it or a prognosis to go by. My counselor has told me not to think a year ahead and allow myself to be swallowed up by the fear of what comes after the money runs out, but how can I not think about that? My life is already so different than it was even just a year ago; I can’t even whisper the words, “How much more can I lose?” That’s like setting up a new dare to the universe.

Hanging up with the Merrill Lynch rep, he wrapped up the call with the requisite, “Is there anything else I can help you with?” The old, working me would have awarded him 10 points for asking the question. The new, disabled me wanted to tell him to suck my ass.

I’m Just The Patient

Posted on by akiwifreund

Today was my big appointment with the movement disorder neurologist at the U of Minnesota, and it was decidedly anti-climactic. My first impression was that he was a young version of Derek Jacobi, pictured here:
Derek Jacobi
All of the doctors seemed to be excited that I was scheduled to see this particular one and told me repeatedly how thorough he was. In fact, I was supposed to see him over a month ago, but he looked over my file a few days before I was due in and instead insisted I get my face tased (with an EMG) before seeing me, which pushed my appointment back so that he could rule out myasthenia gravis (a second time). I knew I didn’t have it as of 2010 and I still don’t.

This doctor was short on bedside manner, so I immediately shortened my answers and didn’t elaborate on anything. We went over my family’s extensive history of autoimmune diseases. He made me walk and do things with my eyes closed to deliberately make me fall (which made me sweat and because I was under so much stress, the tremors started up almost immediately). He shook my shoulders, sending white hot pain through my left shoulder that I’ve been going through PT for but am going to get an MRI for after next Friday because I’m not healing – I spent three years laying on that shoulder because all of my surgeries were done on the right side for that length of time, and the pressure really messed up the tendons and ligaments.

After all of that, the doctor told me that his nurse gave me the website in December that I should have checked out on movement disorders. He must have seen my eyes glaze over and the stubborn set in my chin because he left the room and returned with screenshots of the website. I politely folded them into squares and stuffed them into a pocket in my purse. He said that a doctor from July of 2015 believed that I have a facial movement disorder. I told him it was news to me, since the only thing that was said to my face was that I wasn’t a good candidate to have surgery to relieve the pressure on my optic nerves. This doctor said that the other doctor may have chosen not to tell me that I have a movement disorder because there’s “nothing that can be done about it anyway.”

This entire conversation is deeply flawed. First, I don’t have a facial movement disorder. I have a problem with CSF pooling in my cranium while I’m upright and it presses on some of the nerves leading to my face as well as my cerebellum; as soon as I lay flat, the fluid moves away from the area and I get full functionality back. Second, I have plenty of issues in which “nothing can be done” for them – including alopecia universalis, though he was quick to point out that someone was doing a study. I told him that it was low on my list of priorities. Third, I’m the motherfucking patient. Doesn’t it stand to reason that if this is one or more of the thought process of the doctors that it should be discussed with me?

When it was time to go home, the cab driver that got the dispatch to take me home pretended to come and pick me up but then acted like I didn’t show up – even though I was outside sitting on a bench in between approaching every cab that rolled up asking if they were there to pick me up, so it took me an extra hour to get home after I had to call dispatch to bitch.

I really could have just stayed home.

In fact, I would have benefited from a day in bed. I predicted that I would be laid out for a good week after last Saturday, but I think that it was an accurate call. Now that I have an honest to goodness boyfriend, we’ve been trying to do activities that I can actually handle for a few hours. There was a flea market/antiques expo at the state fairgrounds and I thought we could just take the bus because it stops right outside my building and seemed to spit us out right at the fairgrounds gate. I was not a good planner for this trip and we ended up doing a lot more walking than we thought – and it wasn’t like we had a choice, no one could do the walking for us. My phone tracks my walking automatically and I wasn’t surprised when I saw 2.5 miles for the day rather than my usual high of 0.5 miles. By the time I climbed the steps to my building, I was visibly shaking and was fighting fatigue tears.

But damn, this boyfriend rocks. The Saint Paul is loving and affectionate, and goes on food runs and lets me stay behind so I don’t have to get out of bed. I have begun meeting his family and friends, and he is in the process of meeting my people.

Most importantly, we have said the “L” word, and meant it, and will continue to say it. When someone great comes along, you absolutely can’t take for granted that they just automatically know how much they mean to you or how much you appreciate them. I’m infinitely grateful to the universe for nudging me in his direction.

And then there were two.

Grief and Acceptance

Posted on by akiwifreund

Every other week I am in my counselor’s office, and there seems to be something new that brings me to tears, which drives me crazy. I can’t figure out why I am crying so much. I mean yeah, I have experienced loss on a major scale in the last nine months – my sister, my friend, my uncle, moving states, losing my job, losing all of my doctors, losing my option for more surgeries – but I keep thinking that I should be adjusted by now. But reading this post by my fellow blogger reminds me that I keep experiencing loss and that I still have a sense of instability. Since my U of MN doctors insist that I don’t have Lyme, I have to go through the long process of getting set up through the NIH rare diseases unit and make arrangements through Vanderbilt University to be studied there, as they have locations designated throughout the country for patients to be screened. In the meantime, I have to continue with my treatments with my naturopath, even though I have NO IDEA if it’s the right thing to do.

In addition, I’ve been given the option of getting a TAP block in my abdomen with the hope that it will relieve some of the nerve pain that I’m having from being allergic to the drainage catheter from the shunt. The doc is going to numb nerves on both sides of my abdomen leading to my lower belly. The kicker? I have no idea if it’s going to affect my sexual functionality. And I’ve got a brand new boyfriend. And I really like said new boyfriend and I want to jump him every time I see him. And I don’t think it will be fair to lose what little functionality I do have, because who knows how much longer these good years of responsiveness are going to last? It’s asking a lot of a new boyfriend to possibly give up intimacy for an unknown period of time (forever???); I mean, I call him The Saint Paul, but Jesus H…I don’t know, is there something that is a step above sainthood? If I lose my ability to orgasm, that’s gonna take a LOT of mourning. Maybe some booze and mood stabilizers. I’m already stressed out about possibly taking out the shunt permanently because it’s clogged and I’m allergic to all of the shunts, which means that I may be stuck laying down forever and can’t be up for even an hour.

In closing: Send kittens and puppies and rainbows.

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Wendy's avatarPicnic with Ants

When people think of grief they often think of death, they don’t think about grieving over other significant losses.  Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.

The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance.  Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next.  This is no longer thought to be true.  It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.

The The British Journal of Psychiatry Nov 2008, published a study on grief and acceptance.  The authors note that “disbelief, yearning, anger and sadness may represent aspects of a single underlying psychological construct – grief.”…

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Careful, Your Old Is Showing

Posted on by akiwifreund

This afternoon I had the opportunity to spend time with my cousin’s daughter. We connected at my uncle’s funeral; the last time I saw her was when she was 3 or 4, and now she’s 24.

Over and over, this meme flashed in my head:
40Now

Here are some of the milestones I hit by the age of 24:
– Moved out at age 16
– Worked two jobs since age 18- Moved to Michigan, New Mexico, Kentucky and Ohio
– Road tripped around the U.S.
– Lived with my first boyfriend

I found myself saying those dreaded words, “When I was your age…” and I cringed every time.

In contrast, this young lady has been living with relatives and doesn’t work or currently attend school. We spoke about what she envisioned for her future, which included dreams of working at a bookstore or a movie theater. I prodded her into thinking bigger – after all, bookstores are becoming obsolete, and movie theater jobs are really more for high schoolers. She admitted that what she really wanted to do was travel the world and learn as much as she can. Thank goodness! That I can work with. I told her about how The Professor works at a law library on a college campus, and we agreed that a library would be a perfect environment for her. She would be surrounded by academics and wouldn’t be required to ask patrons if they would like to upsize their sippy cups for another $0.50.

Another area that I thought would be great for her (before she and I even had a chance to sit down and talk, but she brought up this afternoon) is the tech field. There is still a huge disparity of ratio of male vs. female tech employees and it’s a field that does not often require customer service interaction with the exception of level one support. There are so, so many degrees and specialties in the tech area that she could go into that really, she just needs to pick one and it should not be difficult to make a living.

So again, here is the whole closing a door/opening a window business being demonstrated in real life: I can’t work, but that doesn’t mean I have completely lost my value in this universe. I think I can successfully mentor this young woman and hopefully send her off into the world with some practical skills so she can do the things she thought were only a dream previously.

Sharing Is Caring

Posted on by akiwifreund

I got accustomed to living in my house in Phoenix; I had a large lot, the walls were brick, and not many sounds penetrated from the outside with the exception of the neighborhood roaming illegal roosters crowing day and night. Conversely, I could make as much noise as I wanted to like singing loudly, and I didn’t really have to worry about disturbing my neighbors. In true Phoenix fashion the curtains were always drawn to keep the sun from heating the house up too much.

Now I’m in an apartment in an old building in Minnesota that is less than 1/6 the size of my house, and besides being aware of the size, I’m aware of touching space. Specifically I know what my neighbor upstairs has for breakfast on weekends, or when her kitten is playing with a toy. I also always wince whenever I drop something on the floor in case there happens to be an apartment below me in the basement (which I still can’t figure out but have heard noises come from that area from time to time like someone is doing prep work in a kitchen).

All winter long I have had a fan going because even though this is an ancient building, the radiators work like ancient screaming, steaming beasts, and I sweat like crazy. I don’t even get under the covers. I also wear my summer pajamas, which are usually big t-shirts or chemises.

Today, however, the radiators are not on, so neither is my fan. It’s just chilly enough for me to be under my covers and for my electric bed pad to be on. I decided to dissemble my fan and wash all the parts because they have been caked with dust like fans are wont to do. In the quiet, I have become aware of certain things.

First, just because my fan has drowned out outside noises to me, doesn’t mean my fan has drowned out my noises to other people. I mean sure – I’m a decent singer. You’re welcome, neighbors. Second, I could hear my upstairs neighbor and a few of her friends giggling. This was not loud giggling. If this was not loud giggling, then what could she hear from ME? I really, really need to work on my whisper-scream, if you know what I mean. Pretty sure I need to stuff the space around my door with towels too. What the other tenants must hear when they pass by my door…! I can see it now: “Hang on, honey, I need to do some soundproofing. Hold that thought.” I just saw the movie “Room.” I wonder if I could soundproof my little sweat box just like the psycho did the shed where he kept the girl imprisoned? I would only use my powers for good and never for evil. I sure would love the luxury of screaming loudly without summoning the cops. Of course, that would work against me too. I have wiped out a few times in the tub and it would be just my luck that I will have to holler for help at some point and not a soul will hear me just because I want to set up my apartment to have noisy sex.

Speaking of sweat box, I tend to dress down when I’m in my apartment and it’s about 80-85 degrees F when the radiators are blasting away. My windows face a business that doesn’t have any windows facing mine and the alley doesn’t get any foot traffic because it’s fenced off on both ends…except for today. When I got up this morning I raised my blinds about a foot so I could see some sunshine. However, at around 9 am, two heads came floating by my windows about 7 feet from where I lay in bed next to the windows – I’m on the first floor, but I’m up a half flight of stairs, so my floor is not exactly flush with the ground floor. Apparently the business was experiencing problems with its ventilation system and a bunch of guys had scaled the fence to work on the wires.

I didn’t make any sudden movements, just laid in bed in my not-safe-for-public-consumption t-shirt and undies, no makeup and no wig. I slowly raised my body pillow so that it blocked me from their sight and when they left the alley temporarily, I jumped out of bed to put my shades back down. I honestly don’t know if they were being polite or unaware by not looking in my windows. Really, I was doing them a favor by sparing them of the full effect of me in all of my glory because it can be quite startling if one isn’t at all prepared.
This is the ultimate dilemma. If spotted, do I flash them my saggy 40+-year-old boobs so they know I’m really a woman and not a dude with a bald head? I mean, if I were transsexual, there is no way I would pay money to have this body. <sigh> I guess this was a good reminder that I shouldn’t run around in my skivvies with the blinds up even a little bit.