I've had indications of both Lupus and Fibromyalgia dor as long as I can remember. Hind sight is always 20/20, right? But I was just a kid, so maybe I thought that everybody felt this way.
For as far back as I can remember, it hurt my back to lay on the gym floor during school for pushups, or stretching, or whatever else. It didn't seem to bother anybody else, but it was next to unbearable for me.
When I visited Hawaii as a child, and often during Summer weather, I'd develop what I thought was a heat rash, mostly on my nose, chin, neck and chest. I always thought it was from sweat.
I keep having weird dreams I can't remember, I can only feel. I'll wake up feeling like, in dream world, Sean and I have negative energy, but in real life we're really great. I also find myself in dreamilke states of my past. Blurs and colors and isolated old rooms from childhood.
Since... Forever?
I'm feeling
i'm very stressed out about everything right now. the lack of money yet need for it is driving me absolutely berserk. i'm worried about my family. i'm worried because one of my wisdom teeth is coming in, finally, and it decided to do it at the worst time possible - when i don't have insurance. i'm exhausted from worry, and i can't take my mind off of it. i've been trying, but i just don't know how. i have so many things going through my mind, they are all fleeting worries that blend into one another. i'll be worrying about one thing and that will remind me of something else to worry about and so on and so forth. i've been like this since i was a kid.
surprisingly, otherwise, i'm not feeling too horrible. my wisdom tooth is bothering me so it's probably helping me not focus on the body pain so much.
i want to go to a chiropractor.
Status Update
Woke up at around six and have been awake ever since. My fingers and feet have been freezing even though I turned up the heat, heated them under water and am now under the covers. My right hand is so cold. I also feel like I am definitely sick now. I'm coughing.
Feeling...
The last couple of days I've been noticing that tingle in my sinuses again. It comes and goes, but when it is here, it's incredibly annoying and painful. I'm not congested or anything, but the last two days I've been much more tired than usual. I think I'm either getting the sinus infection again, I've got intense new allergies, or I don't know. I'm also running a low temperature. im going to take some antihistamine.. maybe it'll help.
Fibro Symptoms I relate to
(This post is mostly just for my benefit)
Severe Fatigue - I've had this problem for quite some time. Seems like after the two horrible weeks of Prednisone tapering, my energy level improves a lot.
Poor Sleep - I have a lot of dreams that I don't remember, but leave me with a bad, anxious, angry, guilty, scared or just bad feeling. Especially lately.
Post Exertional Pain - After anything physical, I feel light headed, very flushed, hot, short of breath, and nauseas.
Tension Headaches - I've been complaining of these since my diagnosis of Evan's Syndrome. I still have a big problem with them, and tylenol doesn't come close to touching the pain. I recently discovered that an ice pack really helps.
Cold Intolerance - I've mentioned before that when in bed, my body is OK under the covers, but if I put my arm or shoulder outside, it becomes stiff and very sore.
Unexplained Bruising - Self explanatory.
Chest Pain - I get a sharp pain in my chest sometimes that increases with breathing in and out. Usually happens a few times a week.
Jaw Pain - Every so often my jaw clicks, becomes very sore. I clench my teeth a lot. I find this to be more evident when going through Prednisone withdrawals.
Dizziness - I get dizzy most of the time with I stand up.
Depression and Anxiety - I've suffered from both since childhood.
PMS - My periods are very painful. A lot of painful cramps, extreme fatigue and dizziness.
Restless Leg Syndrome - Self explanatory.
DEA agents seize medicine from sick woman
"I don't know how many times I have to fight for this before I can get some peace and not violate any laws," said Robin Prosser, who said medical marijuana is the only thing that helps her manage the pain from a lupus-related immunosuppressive disorder. DEA - "Shut up, we own you."
read more
Feeling... (handwritten)
Headache across forehead and temples all day long. worse when I bend over and stand up. also accompanied by extreme dizziness, faint of breath and low grade fever.
Shoulders, upper back sore. Arms extremely weak all day long. Difficult with writing, dressing, anything involving moving.
Very tired all day, took nap for about two hours, still very tired yet restless.
Also lots of menstrual cramps, lots of nausea (off and on) but I still have an appetite.
Status Update
I've been fighting a sinus headache since that sinus infection I had about a week ago. I'm going to try alternating hot and cold compresses and rinsing my nasal passages with saline. I've been having a lot of pressure and pain across my cheeks, eyes and nose. I also have a slight tingling feeling behind my right eye and into my right nasal area. It's really sore and annoying, and it's starting to affect my vision.
http://www.entnet.org/healthinfo/sinus/s
http://www.theentsite.com/nasal_saline__.h
I've also discovered a few articles on the web supporting Fibromyalgia scientifically, and even and article specifically addressing Lupus AND Fibromyalgia. Everybody needs to be retaught everything they ever learned about Fibromyalgia. Even people who have it.
http://www.myalgia.com/concurrence_of_lu
Incompetant Social Workers Who Just Don't Care
(Otherwise known as "The Story of my Life")
Dealing with state or federal assigned caseworkers is hellish. The one I was assigned to most recently says 'I don't know' as a response to questions 95% of the time. I requested she talk through my mother or through Sean, instead of myself, since I have a hard time controlling my emotions with them and not getting completely frustrated and angry.
When the pharmacy initially called and told me they had cut my insurance, I started having a panic attack. The panic attack somehow triggered the worst nosebleed I've ever had. I was gagging and choking, while trying to talk on the phone and crying at the same time. I've requested help for my anxiety, but they refuse to pay attention to it. Everything gets 'pooh-poohed' by them.
When the caseworker finally called me back, I told her that she was cutting medications from me that I need. If I were to stop taking them altogether, my kidneys would fail. Adrenal failure or something (more factual posts will be coming soon, I'm just tired and need to write this before I forget to.). She said "How is that?" skeptically. And I told her, because it was the closest comparison I could come up with in that state, 'Because withdrawing from Prednisone is like withdrawing from HEROIN!'. The woman's response? "Well, I've never heard THAT."
When I called the doctors office and told them they pulled my insurance out from under me while I was going through withdrawals, the nurse was extremely concerned. SHE knew the severity of their actions. These people need better training and they need to do better research about the people they're supposed to be helping.
Boy Oh Boy Am I Ever Fed Up
When I went in for my first appointment to meet the DSHS CSO (Department of Social & Health Services Social Worker) I knew from the first time that I was going to have problems with her. It's been six months and she's still saying 'i don't know' just as much as the first time we met. I'll go into more detail about that meeting and my other experiences with her at another time, but let's just say I've heard a lot of 'I don't know's" on her behalf. At that original meeting I indicated to her that I was suffering from extreme social anxiety, so she sent me to an psych evaluator.
1) The lady had a flight of steps in her office, kinda difficult for someone who is disabled and there for that reason, to climb up.
2) She barely said to words to me. I took a 500 question true or false quiz, then I did two timed connect the dots. I'm not exaggerating by any means.
From the psych evaluator's amazing test giving skills, she decided that my anxiety was the result of my 'abuse' of PREDNISONE and HYDROCODONE. ABUSE.
Status Update (handwritten.)
From the amount off Benadryl, tylenol and my regular medications taken to treat the sinus infection, my kidneys are suffering. I'm 'on the verge' of a UTI. I drink tons of water and juice and still the symptoms are there.
I'm sure the Prednisone withdrawals aren't helping with my kdineys, either. Plus the side effects of loss of appetite and nausea means I'm eating next to nothing with probably doesn't help either.
Fibromyalgia Exercise Routine Theory
I started seeing a rheumatologist who immediatley started weening me off of Prednisone. Prednisone is a commonly prescribed oral steroid used for a variety of things from ear infections to autoimmune diseases and arthritis. People with Fibromyalgia and Lupus, like myself, often take it for prolonged periods of time which isn't very good for you, but is supposed to be helpful with pain. I had been on 10 mg everyday for two years. Withdrawling from Prednisone is like withdrawling from any other drug or alcohol or smoething like that. It's very difficult and painful. When I tapered down to 9 and 8, it wasn't THAT bad. I was in pain. sweaty and tired. When I tapered down to 7mg this month, it was horrible. I couldn't eat for a week, was sweating constantly, couldn't sleep but I was exhausted and my bones were creaking and popping and aching like crazy. I have six more months of this. I hope it doesn't get worse, but I have a feeling it is going to. But on the plus side - after that week of awfulness, I feel pretty good! More energy than I've had in awhile, in a better mood, I'm not having as many hot flashes. I am in a lot more pain in my joints, but otherwise I feel pretty good. I hope that when I continue with the withdrawls, if the week of withdrawl is terrible - hopefully that means I'll feel even better after each one. Let's keep our fingers crossed.
My hypothesis : Every month my withdarwl will be worse and wosre until I am completely off of the medication. But after that withdrawl, I'll be getting more energy, but accompanied with more joint pain. Hopefully my doctor and I can figure out a good pain regime. I'm starting a warm stretching routine. With Fibromyalgia, you're supposed to start out very slow and gradually increase.
Here's what I'm doing:
Warming my muscles in my leg all over for about 30 seconds. just enough to warm the muscles. stretch each of these muscles in this order gently for 15 seconds EACH (bottom of foot, ankle, calf, knee, upper thigh, inner thigh, groin.) each leg. (once i get up to 30 seconds i will increase to stretching my upper thigh and calves while standing.)
warm arms and sides and shoulders of individual arms, then stretch each muscle individually (i have my own way of stretching i can't erally explain. but generally the same concept. 15 seconds at first for each muscle.)
warm front, beck of neck, collar bone, etc and stretch each side individually, 15 seconds each.
warm stomach and stretch stomach foe 15 seconds.
everyday i'll test my limits.. try to make it another 5 seconds gradually, and i want to do the regime at least twice a day.
i tried it today and i had some pain immediatley in my shoulders and back. i'm going to keep trying it and blogging about it though. i guess i just have to keep pushing even if it hurts.
Just some thoughts
looking back, my senior year of high school was the hardest i'd experienced in my seventeen years. but at the time, it didn't completely make me collapse. i think that it was some subconcious mechanism in my brain, trying to protect me from the hardships to come.
in grade school, i excelled in reading and most other studies. but, as with most kids, middle school was a bit of a shock. i have a hard time remembering seventh and eighth grade, even though i didn't drink or do drugs or anything like that. i was a good kid, but i had a troubled family life. i went to one school for seventh grade, and moved again just before eighth grade.
at home, i was the only-child of a single mother who worked as a bartender trying to make ends meet. even though my parents were never married and broke up a year after i was born, they remained friends. my dad was a severe alcoholic, and during middle school, he lived with my mom and i. most of the time, he was so drunk he was more like an irritating sibling than a father. i'd been dealing with his alcoholism for a long time and I knew (for the most part) how to handle it.
at school, most of the kids knew eachother because they had the advantage of going to the same grade school together. i didn't, which meant i didn't have any friends. and nobody wanted to get to know the sickly girl with a lisp. and while my grades were great in grade school, they dropped dramatically in middle.
Goals + Worries
x. call Spokane Family Health (?) about getting a general practicioner. Must accept DSHS insurance. Also ask if possible to get a woman's exam there.
x. find a physical therapist on the south hill who is accepting new adult patients with DSHS insurance.
x. find an eye doctor on the south hill who is accepting new adult patients with DSHS insurance.
x. find a dentist on the south hill who is accepting new adult patients with DSHS insurance.
about a week ago i realized i had a small swollen lymphnode behind my left ear. it was sore for less than a day, the it went down. i've been checking it periodically, since then. today, i discovered it was back, slightly larger than before and much more sore. thankfully i'm seeing the doctor on march 1st.
also - my mom called and filled my pain pill prescription. dr. kenney's office did it in a hurry. it made me smile that they actually seem to take it seriously, unlike dr. reynolds.
Cymbalta
yesterday at the doctor, they put me on a new anti-depressant, cymbalta. it's a pain reliever, anti anxiety and anti depressant in one. it completely knocked me on my ass yesterday, but i have to take one everyday. for three weeks, then i start on 2 a day. i'm also getting lowered off my prednisone. one mg every month she said.. so it's going to take me probably a year or so to get off of it. and it's going to be painful, but hopefully the end results are worth it.
i'm supposed to start recording everything, how I feel, my exercise, etc. i have fibromyalgia, i guess, and not rheumatoid arthritis, but i do have lupus and evans. so they told me one of the best things for fibromyalgia is exercise, slowly and gently. my grandma is bringing me a video of fibromyalgia exercises.. and i read a few websites that say to walk and cycle a lot. just slowly at first, for about five minutes at first, and add a minute or two everyday until you're at 45m for walking and 60m for cycling. i need to get my bike up here, and there's no way i'm going outside until it's 40 degrees warmer out.
i slept pretty good last night, probably from the cymbalta, but my anxiety is worse and it's slightly helping with the pain.the np said that I would probably have weird side effects for a few weeks, but that it will go away hopefully. like the anxiety probably. she told me to call her if i had any other side effects though.
advanced global personality test
It's actually pretty pathetic how right it is. (This was so fucking self-indulgent, but it made me think and look at myself from an outside perspective and from an inside perspective. Something I've been needing, I think.)
| Advanced Global Personality Test Results
|
personality tests by similarminds.com
Stability results were very low which suggests you are extremely worrying, insecure, emotional, and anxious. (Couldn't be truer.)
Orderliness results were medium which suggests you are moderately organized, hard working, and reliable while still remaining flexible, efficient, and fun.
Extraversion results were moderately low which suggests you are reclusive, quiet, unassertive, and secretive.
trait snapshot:
paranoid tendencies, irritable, anxious, fidgety, dependent, worrying, emotionally sensitive, prone to regret, depressed, second guesses self, somewhat fragile, dislikes change, prefers organized to unpredictable, suspicious, phobic, craves attention, not a risk taker, low self control, very sensitive to criticism, unadventurous, does not make friends easily, defensive, obsessive, low self esteem
--
just for me to know, the description of the stuff i scored highest on. (the ones i'm willing to admit are in pink.
accomadation - 70% - nice, happiest when helping and giving to others, does not mind serving others, unselfish, generous, self sacrificing, other-centric, warm, caring, loving, peaceful, modest, has trouble saying no, has trouble being firm, does not enjoy fighting, very loyal, prefers team victories over personal glory, wants everyone to get along, not manipulative, drawn to public service fields, good listener, comforter, not materialistic, honest, agreeable, nurturing
hedonism - 70% - willing to break the law if the monetary benefit is great enough, likes tattoos, likes strip clubs, prone to substance abuse, prone to shoplifting, thinks marijuana should be legalized, not opposed to breaking laws, promiscuous, prone to cheat in relationships, kinky, likes to dress provocatively, believes pleasure should play a central role in life, can be crude, believes religion is foolish, does not worry about consequences of actions, addictive tendencies, more a night person than a day person, erotic, more likely to have been on anti-depressants, gets attention through negative behavior, reckless with money, prone to nihilism, unpredicable, self destructive
dependency - 70% - not confident, prone to mistakes, indecisive, desires security and support, fears having no guidance or support, frequently feels envious, not productive without reassurance, gets very attached to people, feels guilty when they disagree with people, seeks acceptance and recognition from peers, dramatizes their suffering, impressionable, can be talked into doing things, fears being unwanted or unworthy of love, never knows what to do next, personality is centered around low self esteem issues, swayed by emotions, can't handle people being mad at me, freezes up in stressful situations, influenced more by others than self, avoids responsibilities, life lacks direction, prone to paranoia, prone to shame, daydreams about people to maintain a sense of closeness
paranoia - 83% - suspicious of others until they have proven themselves trustworthy, more doubt than belief, preoccuppied with death and suffering, fears being harmed or controlled, bitter, looks for hidden meaning in things, personality is centered around low self esteem issues, feels misunderstood, thinks people would not like them if they really knew them, defensive, often experiences disgust, love-hate relationships with most things, likes to test people's loyalty, thinks life is overrated, focuses on suffering, feels like an outsider, existentially depressed, does not trust what people say, prone to shame, suffers from depression, knows the dark side of life very well, attracted to things associated with sadness, would rather remain alone than risk rejection, hard to get to know, makes enemies, loner
hypersensitivity - 83% - tends to get too emotional, can't take it easy, feels gloomy and distraught frequently, more past than future, more feeling than doing, not confident in their opinions or abilities, dislikes themself, prone to paranoia, affected by the moods of others, broody, envious, ideal love seeking, expressive, dramatic, tempermental, impressionable, swayed by emotions, fears loss and separation, poor self image, gets very attached to people and things, hopeless romantic, focuses on suffering, desires security and support, defensive, suffers from loneliness, feels invisible, fears rejection in relationships, can't control romantic feelings and thoughts, existentially depressed, suffers from depression, prone to shame, prone to panic attacks, feelings guide most of their behavior, can't handle people being mad at them, dreams about a rescuer, daydreams about people to maintain a sense of closeness, familiar with the role of victim, worries they will make the wrong choices, conflicts between thoughts and feelings, desires more attention
MRIs and CT Scans.
months ago, i requested dr. reynolds send paperwork to GAU so I could get disability assistance, and he never did. and he had THREE MONTHS to send my medical records to Dr. Kenney, and never did. So today, Kenney had to call them and request they fax my information, but it was all useless crap. So he has to start from scratch, which isn't exactly a bad thing. he took SEVEN VIALS of blood - which was incredibly painful. they had to poke me twice.. the worst part is the needle being held in and being knocked around and bumped when they're filling the vials. i hate that. i get uncomfortable with the touriquette around my arm, and them poking at my swollen veins. i hate that. then, when they don't get the needle in the vein, they have to poke the skin, WITH THE NEEDLE IN IT, to try to get it in the vein, and let me tell you - it's not fucking comfortable. it's not like it's agonizing pain, but it hurts, and it's uncomfortable, and i don't suggest it. the doctor noticed some concentration / memory loss problems and decided to get me a brain scan / mri.
people generally have no idea what an mri or ct scan consists of. a lot of people automatically assume that you're in a big closed coffin like tube for hours unable to move. those kinds of scans really aren't THAT common. the most common mris aren't always of the brain / head, and it's not a long tube you're in. you're in a big round hole that makes loud clanking noises and you have to stay very still, but it's usually only for about 20 minutes. sometimes less. and CT scans are even BETTER. there's the big round hole that makes a lot of noise, but it only takes a minute and you're in and out.
this one is going to be incredibly uncomfortable. i'm going to have to be laying there for an hour to and hour and a half getting this brain scan. i told dr. kenney that i didn't think id' be able to stay still for that long.. for those of you who don't know what it is like to have lupus, ra or fibromyalgia, it can be really hard to just stay still. there is no comfortable position - especially not on an mri table. it's harder than a rock and NOT comfortable in ANY way. Thankfully, dr. kenney is a great doctor - unlike my last one, and was actually concerned about my anxiety. so i'm getting sedated.
Eye Pain
My eyeball hurts really, really bad.
i figured out that it's probably something related to lupus or ra. i have an appointment with dr r. on monday. argh. i hate going to see him i don't want to go to an appointment with him. why do i have to wait three months to see this other doctor? this is ridiculous. so now i'm going to stay positive until we can figure out what's wrong with it. maybe it will just go away on it's own.. but the lupus and ra websites said that it isn't good to leave it untreated. i worried sean about it at work. =/
i looked up a bunch of stuff about our plants and potted a plant today. it was fun.my eyeball hurts.
Troubles With DSHS
I have problems with my medical / food stamps / etc ALL THE TIME. The latest in said developments?
First of all, my food stamps didn't go through until the 3rd of the month. When I called my social worker to ask about the day they should be available her extremely helpful response was 'I dunno.. Usually it's on the first, just keep checking.' And when I first picked up the EBT card I asked for a welcome pamphlet, but was told they didn't have them.. However, whenever I do research about DSHS online, it says I should've recieved a welcome packet with my EBT card. Nothing.
Today, I go to the doctor, then I go to the pharmacy to fill my prescriptions for Prevacid (because I have acid reflux, and when I don't take Prevacid at least once daily, I get horrible, awful, heartburn.) and for more pain killers. This is my usual pharmacy, I know the pharmacist, he knows me, etc. He tells me that I was denied both. 'Person not covered.' WTF?! That's really great for a person with severe illnesses and an anxiety problem, tell them they don't have medical. So, my mom paid $20 for my pain medication, $5 for some lesser strength antacid, and we came to my house to get the phone number to call my social worker.
It wasn't even HER fault! It was some other random person. Since my program changed (meaning I got food stamps.) they had to switch to another program on my file. Well, they didn't do it right, she put me down for food but removed me from medical. She didn't apologize or anything. She said 'Want to come pick up your coupon?'
Um, no, we don't want to have to pay for your mistake. She is sending it in the mail, and hopefully I'll be covered soon. Also, the doctor sent in my paperwork for CASH assistance, yet DSHS hasn't recieved it yet. Which means, it's probably going through DSHS's horrible and long process of filing and processing paperwork.
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