Animal Companions and How it helps me live with Lupus and Fibro

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These two above are my angels. Well, obviously, they’re not always ANGELS all the time, but to me, I cannot imagine living alone without their companionship.

For me, the best thing I have that gets me up, and set aside pain and whatever else I am experiencing, are my pets. I know not everyone is a cat lover; I happen to love all animals. However given my SLE flare-ups and FMS , these two animals really do help me in ways I cannot measure. Also, I know I would do a dog a disservice, if for example, I am unable to go give it the proper walks necessary. Cats are relatively easier my scenario realistically. The second picture, is the older and the boy, and acts like a cat pillow. He will serve as my little spoon sometimes when I fall asleep. My first picture, the younger girll kitty, well, she brings a smile to my face de-facto because she is the sweetest thing I have ever owned. She primarily wants to be pet, or falls over in front of you and purrs while wiggling around her back, or just lays on her side with her paws one on top the other, and stares sleepily at you.

They are a constant source of happiness and amusement to me, even on the worst days. They make me leave the house when I otherwise wouldn’t to get them treats, food, toys, health etc. They make me get up, even if my feet feel like they are on fire, to feed and give them water. I find taking care of something else making sure they’re happy, is something that helps especially since the meds I take conservatively, and therefore I’ve never experienced a single day of bliss without pain since that fateful day I woke up thinking I was poisoned two years ago.

I thought I would share my own story of the benefits I have gained since adopting these two. I got the second one in the pic almost 4 and 1/2 years ago. The first picture, of the girl, I got her about 2 years ago, right around my diagnosis. See, the big guy insists on going outside, so often I would feel lonely without him around. I decided to adopt my second (the first picture) who happened to be terrified of the outdoors, and serves as always knowing I have something living, that depends on me, whenever I come home. When I am laying in bed with pain that makes me want to curl up and cry – I see her and I think, wait does she have her water, enough food, have I pet her? and I get out of bed. 

Anyone else benefit from having animal companions?

I highly recommend it if you do not and happen to live alone while suffering chronic conditions like SLE lupus or Fibromyalgia (FMS). Anything that helps you get out of bed, has got to help. I know the research exists that our furry companions lower our blood pressure, but to me mine give me so many more benefits. If I wanted to go extreme, they make me fight harder to stay as healthy as I possibly can. I know I spoil them rotten, and, I do no know anyone else who is also house-ridden at times like me and can give the affection they get from me and I receive in return. 

As I stated, this a blog about living with lupus and fibro, in an effort to create more awareness. Personally being a student/young adult with both diagnoses; I know my situation is different from everyone else’s unique stories.

I hope to keep posting things that help me in my life, but I do not want to deter anyone who is looking for a place to talk to and share their own stories to me as well. I understand, and I care. I know your pains, I may know some of your travails of your day to day life. If you feel no one understands… I do. Do not hesitate to reach me now by e-mail (lifelupusfibro@gmail.com) or http://www.facebook.com/lifelupusfibro

I guess I’ve gone more public! I was not sure how to do the facebook thing anonymously, so I picked Amy Jade, a pseudonym I used a long time ago when I was a cyber geek as a teen but was afraid of putting out my personal data out there to avoid the scumbags of the internet that troll teen chat boards. So I used to say my name was Amethyst Jade (age 12-17) and the very few I stayed in contact with throughout all those years, and completely validated their identities, well I finally caved and told them my real name at 17. They forgave me. Sorry, tangent. The whole point is, my name is not Amy Jade but FB will not let me use anything does not sound like a name. ah well. Friend me if you wish, and we can connect further. 

Much Love,

S.A.

P.S. I have thumb tendonitis in both wrists. 😦 I got a local cortisone shot in both wrists today, and I now have wear these insane braces that keep my thumb immobilized completely for 4-6 weeks. I am slowly learning to type with only eight fingers. Wish me luck, and forgive me for any grand errors or typos. Sweet Dreams to all of you.

Even though I do not know you in person, I know some of you are the strongest people that walk this earth if you do it with a smile on your face even though gut wrenching pain is coursing throughout your entire body. I commend you. I wish I could give you an award. You’re all super-heroes in your own way. Think of yourselves that way. Life does not give you more than you can handle, so perhaps this deck we’ve been dealt is to improve the lives of others because we experience pain as well, and empathize with most pain suffered by others, regardless of whether they have SLE or FMS. Don’t stop smiling. Keep your heads up. And if you can’t and have the chance, do not underestimate animal companionship.. They help me smile without realizing. We will get through this, in my About for this blog,, I am serious, I do not accept I have an “incurable” disease. I fully believe they will come up with cures in our lifetimes. Believe with me and maybe the positive thoughts put out in the collective conscious will improve our chances. 

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Wrist optional? In other matters – dietary restrictions? natural remedies?

I’ve been struck down by some form of tendonitis in my dominant hand/wrist (my right one). I’m seeing an orthopedic specialist tomorrow for this issue. However, I saw a podiatrist who has determined I have plantar fascitis (sp?) and would prescribe me corticosteroids for the pain… except I’m already on them. I’m also seeing a back specialist on Friday to determine if something can be done for the muscle spasms I’m having there. Sounds like I will be getting back into some regular physical therapy. 

I must say it is disparaging news to receive that you must “rest your wrist as much as possible during the day, keep immobilized at night” when you are behind on 4 papers as it is and hoping that spring break would give you a chance to not only catch up, but perhaps get ahead on some school so the coming weeks are not as mentally tough. 

I find that being humorous about these things help. Even if it seems weird or morose to other people. I saw a few ambulances near one of the buildings at my school on an evening study session and someone said “oh someone’s dying” and I said “Its not me this time!” … well that deadpanned but it was funny to me. (its not like anyone around me really knows the specifics of my situation) Anyhow, my damn wrist/hand has kept me from typing or using pretty much anything as I was not blessed with ambidextrous qualities. 

It has been an interesting week and a half though, with this whole brace on constantly. I was hoping for improvement but it seems that the brace relieves some pain, but as soon as it comes off, WOW, it hurts. I know it is not carpal tunnel, well, I guess I will find out more information tomorrow but the nurse practitioner found the problems to be more along the lines of a wrist injury or overuse. Of which I have experienced none to my knowledge. Maybe I am beating myself when I sleep… THAT must be why I hurt so much in the morning! 

Does anyone else seem to be at their best at late hours at night? This seems to be when I am most calm, and pain is less. However, as the doctors say, I should be getting a “regular nights rest” every night… But it is hard to let go of those hours when I am feeling good and CLEARER, you know? I hate that “fibro fog”. I also hate that “low fever” and tension headaches or migraines that accompany daily. Too bad not many of my other friends share the same predispositions. Sometimes I worry that I have become a self-imposed recluse because I do not care to show my pain to others. Also, I kind of end up feeling like a burden because I know at some point it must be frustrating to someone who cares about you and cannot do anything about it.

I wonder how much of a repellant I am to men de facto once they find out I have lupus and fibromyalgia. I mean, I don’t know how other people perceive people who are walking pharmacies like myself. I have heard from time to time whispers like “she Wants to take those medicines, she doesn’t actually need them”. Well, my ex used to say things like that to me. I tried for him. I tried to go all raw food diet and vitamin supplements a la naturopath. I ended up looking like a skeleton. The vitamin supplements did NOT agree with my stomach, so food just became a squeamish chore. Has anyone else tried diets to help with their conditions? I avoid any artificial sweeteners completely, I drink soy milk over regular, and I do not have caffeine. I’m already allergic to all of nature, shellfish and oranges (random, I know). I have not tried a gluten-free diet. I heard that avoiding nightshade vegetables can help with the fibromyalgia part? I would love to hear insights on this. Has anyone tried acupuncture? 

Anyway, stay positive. I am trying to do that myself. I had a moment where I was leaving the doctor’s office today and I felt this suffocating sense of, “why? can I please get a break?”. Ashamed to admit this, but it was a hard feeling to let go of for awhile. I shed some tears. At the time it just felt my life had degenerated to waiting rooms, doctors offices, hospitals, school, and mostly uncertainty. I wish I knew when and where a flare-up will happen and WHY. Honestly, the fibromyalgia doesn’t help at all because its a general widespread pain everyday as it is, so it doesn’t help me clue in to a flare-up. In fact I know I have been directly responsible for why some of my flare-ups have gotten as serious as they have because I simply wrote off the pain as typical. Until something crazy happened, like last year when my eyes turned yellow and I had end-stage kidney failure. On the bright side, I do not have that type of lupus (necrophilus?) and I was saved in time before I had to be put on dialysis or something else that sounds quite unpleasant. I despise not feeling control over my own health. However, I’ve been trying to shake off this victim feeling for awhile, all day, because it doesn’t do me any good to feel that way, just worse. And, I need to stay happy or else, what’s the point of all this anyway, right? Life throws you curveballs, and in our cases, a lot of curveballs. Maybe we’re just really good at baseball.  

I will leave you with my funny pyjama pants and current day brace I use before I put on the night one because I guess I should sleep and stop writing such long posts. Sorry! (that is supposed to be a thumbs down on the other hand…)

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Taking a Stand

Today, I went to Student Support Services with the hospital discharge information for my flare-up last week. My doctor, with some oversight, wrote me a note that I was able to return to “regular” work on the date of my discharge, last Thursday morning. However, that Wednesday afternoon prior I was placed on IV cytotoxin and discharged that Thursday with rxs for methotrexate oral once a week for up to 2 weeks, not more than 3, and prednisone.

I felt horrible all weekend, and I had a midterm and 2 papers due today. I had enough. I gathered my hospital discharge information that clearly listed I was treated for SLE flare-up and co-morbid fibromyalgia, went to the office in the morning, and informed them that I was having a hard enough time with my professors as it is, missing a whole week while taking 18 credits, and then needing extensions during midterm week would only annoy them further.

I finally ran in to someone helpful. She informed me that she would let the person who handles the registration of these support services this was a high priority case, and even went so far as to e-mail the professor I had a midterm today at 1pm a heads up that I am on medication that truly impairs cognitive thinking, (i’m so dizzy), and that if need be I should be permitted to retake the midterm because I should be accommodated!

Well, good always comes with a downside, of course, the person who does approve these applications for support services is on VACATION (mind you, my spring break starts in a week, so I do not understand the ethics that went in to making that kind of decision when your entire job is to ensure that students with disabilities’ applications are being processed; bearing in mind that high priority ones do come up often, so why would one opt to take a vacation during the collective student bodies’ midterm week?) Regardless, the kind woman did promise me that this person was still processing “high priority cases” while on their vacation. So hopefully, I should have official documentation at my school that will basically e-mail my professors and force them to accommodate my lame butt. Because once approved, I think the ball is in my court, because I am disabled, and we have rights that should be recognized! I had naïvely thought that taking 18 upper level courses would show how much initiative and commitment I had to my program to my professors – WRONG.

I should not be getting stressed out while on immunosuppressants! Methotrexate is oral chemo for crying out loud.

Cross your fingers my application is approved quickly, so I can take the stress of professors who think i am lazy, lying or plain do not care off of my plate. If I could actually share the e-mails I have gotten this semester, ie: following an email explaining my absence with attached doctor’s note, you would be shocked at how abrasive these professors are about ONE absence. Even a legally documented one. I was asked at one point “If I still planned to be in the class, because if I miss another class I should consider withdrawing and receiving a W on my transcript”. I had only missed one class by this point, and, had been marginally late to a second. What. The. Hell.

Anyway, sometimes getting mad, and, Taking a Stand could help alleviate some of the doubt we receive daily. At least I hope this effort of mine does. It doesn’t cure our diseases, but it at least extolls others to conform to the idea of accommodating someone with a “weird sounding incurable chronic illness” they do not understand or care to. Especially, with regards to Fibromyalgia (FMS). I find it absurd the amount of material I see online that still lists it as an “ambiguous” disease along the lines of something that makes it sound, well, made up.

So, I must say today, stand up for yourself. Get whatever documentation you need, and, do it. If you have to force awareness into the people around you at work, school, home, do not let our illness keep you depressed and down, get mad, you have the right to and do it. We are all stressed out, in pain, and trying to put up a happy face for them all the time. We deserve some dignity too.

Much Love,

S.A.

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Your Disease Sounds Weird and Made Up

So I wanted to start with this topic. How many people with lupus and/or fibromyalgia do you know? If you are a sufferer of either, how many times have you faced general apathy from all those around you who are aware you have these conditions? Have you been called overly sensitive, lazy, or get the feeling that people are annoyed if you bring it up, ever, after mentioning it the first time? Have your doctors ever treated you this way? Made you feel like you were over-exaggerating, or accused you of making your illness worse while they treat you like a guinea pig and try out some brand new drug with a plethora of side effects that often make the whole situation worse?

I have. However, for all of us out there, first there will never be a ONE time I will bring it up. It is with me everyday. It affects how well I can think, the speed my brain processes information, my ability to focus, my ability to sleep well, my ability to get out of bed even though I am wide awake, and, so frustrated that at age 27 I sometimes feel ancient and brittle. Also, on the topic of the sun. I really hate it when someone makes a joke I am a vampire. Luckily, I’m blessed with olive skin, so I don’t care about tanning anyway. I always had an weird impulse to avoid the sun or wear extra-protectant sunscreen even as a child.

However, if you are reading this, and you do know someone with lupus or fibromyalgia, I ask you one thing – look it up. See what it does to someone’s mind, capabilities, mood, body, organs, joints and chronic unending pain, pain in your head, your whole body, bone deep, muscle spasms, muscle aches and what I call “gimping out” my left foot just won’t work. Or my right hand does not want to work. I’m not asking you to rush to their aid or something, but it would be nice to generate some kind of awareness. It is a hard thing to live with, and a hard thing to explain when you are young, in school, and “look healthy”. I believe that some of the best emotional liars are people with chronic pain syndromes, and of course, the awful lupus. I know we put on a happy face. We do not want your pity, we want your understanding, some sympathy, some sort of accommodation that does not make us feel like a nuisance on your lives – PROFESSORS.

I have a standard lupus headache that does not respond to anything. But for the rest of the pain, I am on hydrocodone, not on a daily constant basis. I kind of wait until I have to use it. It does interfere of course with a flare-up for it has NSAIDS and those do not play well with immunosuppressants.

Anyway, I felt the motivation to start a blog because at the profound apathy, lack of accommodation, UNWILLINGness to accommodate, and annoyance amongst some of my professors. I will admit, for some of us, these conditions make us very emotional and hypersensitive. Why? Because you have no idea how hard it was for us to get to work, school, and carry a bag of any weight in, and then self-consciously take the stairs because I do not “look sick” enough to take the elevator up one floor. Honestly, halfway through my first class, I am exhausted. I would much rather be in a dark room, lying down, and god-willing asleep so I do not have to be conscious of this body for some brief heavenly time. I have been considering getting Dragon? to help me type. I had to stop a lot handwriting about 6 months in to my diagnosis because of my wrist/fingers pain.

I guess the “Weird and Made Up” part in the title is for the Fibromyalgia sufferers. It is a prognosis of elimination. I am already sorry for all the money you have spent, all the needles that have been stuck in you; by and at so many doctors to figure out what the hell is going on. I was 25, and one day I woke up, I felt so much pain I could not move out of bed. I actually went to the ER because I thought I was poisoned. Then, after all the diagnostics, I found out this is how I will feel everyday.

There are ways to cope. And my next post will hopefully be a lot more geared towards positive support. I know this one was rather complaint-ridden. For that I apologize. But, I just came out of a flare-up, I am on Methotrexate once a week for hopefully 2 more only and prednisone. I guess I am mad I cannot carry my life on the way I used to. I miss that. I miss being fast, and quick. I miss waking up quickly. I miss a lot of things. But on a positive note, it does make me appreciate life a lot more on days my mood is better. I look at the smaller things a lot more, that I might not have noticed because I used to be a Type-A, go-getter, overachiever. A lot of those qualities haven’t vanished, and so I do feel so much guilt when I am incapable of something I KNEW I used to be able to do quick, easily, and without hassle.

If you made it this far, congrats. And Welcome to the Weird Chronic Disease Sounding Club. 

much love,

S.A.

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