Confessions of a Book Store Owner

And, on the other hand, some bad news (but also good news). This morning, I went to the free clinic they have every-other week at the homeless shelter. The nurse there said that I have ‘chronic inflammation’ in my left foot (which means that it is swollen and painful, which I could have told you lol), but that it may be due to a lupus flare… She wants me to go to a doctor to see if it is a lupus flare, and if so, if there are any ‘invisible’ (aka ‘temporarily painless’) symptoms, like nephritis. So I got a referral through this awesome program, and hopefully I will get to go to the doctor soon if the waiting list isn’t too long :D

Okay I am about to leave McDonald’s and head back to our motorhome, so before I go, I’m making one final plea: PLEASE reblog the shit out of this. Even if you can’t contribute, and trust me I KNOW how difficult times are right now, PLEASE help me out with a signal boost. Don’t donate any money unless you can absolutely afford to, but if you can donate please feel free to send me an address (anon is fine) so my kids can send you a lovely card. 

For those of you who don’t know the situation, my kids, myself, and my kids’ dad have been homeless for 2 months. We are currently living in a broken-down motorhome with no electricity and no plumbing. We use our truck to tow the motorhome to parking lot to parking lot when we get told to move on. The truck broke down Saturday, and without the truck, our motorhome is at risk of being impounded. Which would mean we’d be back to sleeping on the streets. All the truck needs is a new power-steering belt, installation, and a tow to a body shop that does belt installations. 

I have been in remission from lupus and cancer since October, but since we’ve been homeless, I’ve been having arthritis flares. Getting the truck working is essential not only for the sake of our motorhome, but also so that I don’t have to walk to work. John and I own our own business, where we work 60 hours a week each. John also has a second job and is looking for a third. I have been looking for a second job fox six months and have an interview tomorrow. We don’t get any food stamps, childcare assistance, or housing assistance (duh on that last one). 

Donations will be used to get our truck running, and if anything is left over, to get the electricity and plumbing in our motorhome sorted out. This would make a huge difference for my family— It’s not easy going 2 months without electricity or running water. Any help is appreciated, and if you can’t help, I completely understand but PLEASE help out with a reblog. Thank you so much!!!

So I’ve been really nauseous since yesterday morning, I spent all of yesterday feeling like I was gonna throw up, and then this morning I realized I am either very dehydrated or my kidneys aren’t working right again because TMI IF YOU DON’T WANT TO KNOW STOP READING BUT I KNOW LIKE HALF OF MY FOLLOWERS HAVE CHRONIC ILLNESS AND TALK ABOUT THIS STUFF ALL THE TIME SO THEY CAN HELP EACH OTHER OUT SO I’M POSTING THIS TMI ANYWAY because my pee was orange-red 0_0 like literally the color of a blood orange. Soooo my plan is to drink as much possible today and pray my kidneys aren’t fucking up again because I really cannot deal with lupus coming out of remission right now and I’m scared because I’ve had semi-crippling arthritis since Sunday but that might also just be from stress, duh. So I’m gonna pretend I’m still in remission and just drink a lot today :/

I have a feeling everything will get better when the weather gets warmer. I will learn to ride a bike. We will go hiking or camping every weekend. I swill swim all summer long. I will get healthier. I’ll start growing some weed again, I’ll eat more fresh marijuana, I’ll go into remission, I’ll be healthy. I’ll be happier when I’m healthy and when I’m gardening and when I’m outdoors and in the sun and active. I’ll make more friends while I’m out doing things like biking and hiking and camping. The kids will make more friends when they go to preschool, when we go to the pool. We’ll have people to hang out with. Business will pick up when it’s sunny, when more people are sidewalk-shopping, when more people are out and about enjoying art galleries on warm summer nights. Business will do better. We’ll start saving for our own house, start looking at ridiculous abandoned houses and daydream about cleaning them up. Maybe not this summer, but maybe next summer we’ll have a house. I’ll have a garden again, and chickens. I will eat food that is fresh that I grew myself. Lupus won’t come back. Cancer won’t come back. I will healthy and happy and do will my family. 

Okay I need advice from people with feet. Mine are in terrible pain. They are terribly swollen, particularly the ball and toes, and I can’t put much weight on them. Especially my right foot. My right foot also has red spots that seem to be under the skin and are spreading— one started out as a crescent-shape on the ball of my foot, the other is on my big toe. They’re terribly painful and I constantly getting burning sensations, prickles, needles and pins, etc. I’m getting needles and pins, tingling, and numbing in my arms and hands, too. I suspect it is either neuropathy or something to do with Raynaud’s phenomenon. I have lupus and Raynaud’s phenomenon, and I know I have been out in the cold too many times in the last week for someone with Raynaud’s. 

I’ve been putting a cannibus salve on my feet two or three times a day, and drinking a lot of water since lupus can sometimes lead to water retention and swollen feet. But I don’t think that’s it because the amount of water I’ve been drinking should have flushed it out by now or something. Any other suggestions for dealing with neuropathy or Raynaud’s homeopathically or holistically? My feet hurt to touch and somehow I just suspect that going to the doctor will get me a medical bill but not much else. 

Suggestions appreciated question mark so the answer box will show up?

And when I got cervical cancer, my OB/GYN sent me a pamphlet in the mail titled: ‘Gynecological Problems: Disorders of the Cervix’ and it has a few sepia-tinted photos of racially-diverse women looking sad. I don’t need this fucking pamphlet. I was given a toxic substance to treat a largely-ignored disease. Because there is, comparatively, so little research for treatment for lupus, I got toxins and steroids and immunosuppressants. And they suppressed my immune system, that thing that’s supposed to nip cancer in the bud, and I got a type of cancer usually found only in women with AIDS and who have just had major organ transplants. That’s how fucked my immune system was. Cancer showed up, and I didn’t stand a chance. I had nothing to fight it with. And now that I have a ‘real’ disease, everyone feels bad, but they still just mail me a pamphlet about cervical disorders. I don’t have a fucking disordered cervix; I have fucking disordered health care. 

supermodelrevealed:

What do you see wrong in the above picture?

Is she breaking the law? She appears to be the correct age, judging from the back, but one cannot say for a certainty. But since she is apparently in a place where she can purchase alcohol, we have to assume she is of the appropriate age. 

What else is wrong with this picture? Is it because this woman is standing up from an original seated position in a wheelchair?

Hmmmm….because only people who cannot under any circumstance walk use a wheelchair..

We all know that this isn’t true. This woman may use a chair because of a heart/lung condition. Or perhaps she has a balance issue. Maybe she can’t go long distances without the use of a wheelchair?

I know this has been posted on the internet because someone thought that this was funny. And upon first glance, one would assume that she is faking a condition. But how can you know without knowing this person’s situation.

I have the use of my legs but frequently need a wheelchair, especially if I’m going to be out for longer than twenty minutes, especially at grocery stores, shopping malls, etc.  I will simply fall the floor without any support at all. I do use a walker for restaurants, movie theaters, etc. where I won’t be on my feet for too long, and mostly a cane around the house and quick trips where I won’t be standing at all with the exception of getting  from my car and back.

On a few occasions while putting my wheelchair in the trunk, I have stopped people and traffic dead in their tracks as they watch me miraculously get out of my chair and limp to the door.  Their mouths drop open as suddenly I can walk. It doesn’t get through to their heads that people can use wheelchairs for different things. It is not always that the person doesn’t have the use of their legs. 

This picture exasperates me every time I see it online, especially here on tumblr. It makes me wonder what people truly think of me, when I have to get out of my chair. 

Thank you for this post. I wish everyone understood this; but, judging from the text on the image above, we can clearly say that everyone does not. When I was at my worst of my flare last winter, and couldn’t walk at all without support, I should have been in a wheelchair on my worst days, when I fell down a lot. But I didn’t use one— partly due to cost, partly because I knew what people’s reactions would be on the days I could walk and was ‘miraculously’ no longer in a wheel chair. 

It’s not fair to have to base your medical decisions on what people’s reactions will be. 

I woke up this morning with that unmistakeable chest pain whenever I breathe or swallow… No doubt about it, it’s pleuritis again. I immediately had to restrain myself from bursting into tears. I haven’t had pleuritis since October, when I was at my absolute worst. To combat it, I was taking 50mg of prednisone daily. This was back when I was taking upwards of 15 pills a day, between the steroids and immunosuppressants and raging toxins meant to kill my immune system before it could kill me. This was just before I failed a dementia screening.

That will not happen again. I don’t care what happens, I will not let myself be subjected to a battery of toxic chemicals again. I’m going to find a way to treat this without steroids.

It’s just so upsetting because I was just starting to think that maybe I was going into remission. 

The past couple days have been… eh. I could feel a flare coming on the day before yesterday and just ignored it. Yesterday we went to the lake and I kept ignoring it, but by the time we headed home, I was in so much pain. Not that my muscles were sore or my joints were swollen, just this pain, the kind that seems to envelope you like a second skin. That continues this morning. If you asked me what hurt, I wouldn’t be able to say for sure, just that I was absolutely miserable. I ended up snapping at my boyfriend and then just going back to bed out of shame at about 10 am, and slept until almost two. Then I smoked a lot of pot and made a marijuana milkshake (raw cannabis has, in some cases, been shown to decrease ANA counts in lupus patients). Then we went to the nature center and walked about 2 hours. Now I am very sore and very tired, but that persistant, painful misery is gone. There is only identifiable pain. Like.. my knees hurt. My hips ache. But it’s specific body parts, not the core of my very being. So I hope that’s a sign of improvement. I hope I don’t feel like death tomorrow. I just want to be physically capable of being the mother and girlfriend I want to be, and the mother and girlfriend my family deserves.