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.
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
(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.
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.
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.
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.
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.
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.
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.
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
|
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
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.
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.
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.
Sean's parents are helping him buy a new house! It's a 4bd 2ba, we'll each have a room and we'll have three roomies. I haven't been there yet, but I'm really excited.
I'm really hoping my disability gets approved and I can start paying my way, and doing new things.. I want to build a couple websites, (Sean and I are in the early stages of putting together a comedian reference website.) and also create an etsy store where I can sell the various things I make.. Jewelry, crochet hats, crochet washcloths, etc.
I don't see the dr again until 10/23, then we move into the house on 10/25. busy month!
A few days ago, I told Sean that my eye was bothering me. The next morning, it was super red and swollen. I have to go see Dr. R tomorrow.
I'm really anxious and am sort of freaking out in my head, about everything.
So this was my first year attending Bumbershoot, the Seattle arts and music festival. They have a billion music acts and each year the comedy has been getting better and better. When I found out that Tinkle was going to be performing at Bumbershoot, I decided then and there I would go. I didn't know any other music or comedy I'd want to see at that point. Then they released the whole lineup. Nothing musical I had any kind of inkling to see except Atmosphere and Sean wanted to see A Tribe Called Quest. But the comedy lineup was PHENOMENAL.
Not only were Tinkle, a comedy 'troupe' that consists of three of my favorite comics of all time, David Cross, Todd Barry and Jon Benjamin.. But also Zach Galifianakis, Doug Benson, Maria Bamford, and a bunch of other comedians I'd never heard but have heard OF. As we got closer to Bumbershoot, I began to worry more and more about being out in the sun, being tired, walking around.. Plus everybody I talked to said that the comedy theaters are usually packed to only standing room, and if you saw one show, there was NO WAY to make it into the show directly after that.I stressed, but then I saw Doug Benson say that if anybody needed help getting into shows to let him know.
Doug gave me his number and I called him when I got to Seattle. Thanks to him, Sean, Chad and I got to sit in each theater between setting up / emptying and filling the theater. So we had amazing seats the entire time.
The first day we saw John Mulaney, Maria Bamford, Dana Gould, (Eric) Slovin & (Leo) Allen, Zach Galifianakis, Aziz Ansari, Nick Thune, Mary Lynn Rajskub, Doug Benson, and Tinkle at the Intiman Theater. The Mulaney/Bamford/Gould show I had crappy seats all the way in the back, but the rest was front and center, basically.
The second day we saw ASSSSCat (with emcee Doug Benson.), Nick Thune, Mary Lynn Rajskub, Aziz Ansari, Trapped in the Closet (hosted by Paul Scheer and Aziz Ansari with guest panelists Leo Allen, Matt Walsh, Mary Lynn Rajskub, John Mulaney, and Rob Huebel.) and Best Week Ever Live (Paul F Tompkins, Christian Finnegan and Doug Benson). While waiting after ASSSSCat got over, Michael Blieden, a documentary filmmaker interviewed me for Doug Benson's upcoming project. He's doing a documentary on Marijuana. Kind of like Super Size Me only 30 days of smoking weed. I just gave a short interview about medicinal and how it helps for me so much. It was really great to meet Michael Blieden - who I was a fan of without even knowing it. He did the Comedians of Comedy movie AND show, and the upcoming Zach Galifianakis Live at the Onion movie.
The third day Sean and Chad ran to get me some food while I waited outside the handicapped entrance at the Charlotte Martin theater. While there, I happened to be sitting by the stage entrance, where Doug Benson strolled out and hung out with me for a few minutes. After that Arj Barker came and sat on the other side of me, then out runs Zach Galifianakis. They introduced me, and I got star struck. Doug, Arj and Zach surrounding me plus this great filmmaker filming it all. It was a great time. I was then interviewed for awhile more about medicinal, so I'm thinking i'll be in a decent part of the flick. So be sure and watch for me. ;)
For a recap - the day I went in to do the Cytoxan (chemo) a nurse told me I didn't have an appointment for that day and that Dr Reynolds wasn't even sure he wanted to go ahead with the Chemo. I cut my hair, I mentally prepared myself for over a month and that's what happens. We have a meeting with him, I freak out because I'm incredibly angry and he's acting like it's MY fault. He even said to Sean and my mom 'This must be difficult to deal with all the time.' I'm not fucking like that all the time, I am pissed because YOU fucked me over, and are blaming it on me!
So I get referred to Dr. K. We called ahead and asked if he accepted my medical - DSHS, which most people don't. The receptionist said they did, we sent me paperwork and tried to make an appointment today, but the lady said they don't accept my medical. Just wonderful. Even if they did I wouldn't be able to get in until November. Lovely. I need to see someone ASAP. My lupus and ra are currently untreated except steroids, which I'd like to get off of EVENTUALLY. I've been on em for a good two years now.
Not only that but the last time I got pain meds from Dr. R., he prescribed me Hydrocodone instead of my usual Oxycodone. The difference is Hydros have a bunch of tylenol in them, Oxy's don't. The tylenol makes me nauseas, headachey and hurt my body really bad. We have been trying to get ahold of him since Thursday of last week. We've been calling every day and the nurser promises he'll call us tomorrow. but he's NEVER there when we call and he hasn't returned the call yet. He's calling tomorrow and I'm LEAVING tomorrow at like 6pm! This is SUCH bullshit. I'm SO SICK OF EVERYBODY IN THE MEDICAL / GOVERNMENT SUCKING FOR A LIVING.
on a lighter note -
bumbershoot is so close, and doug benson is probably going to help us get into some good shows. i'm terrified i won't get into some of them. i'm not going for music and the comedy tents are usually sold out.
Monday I'm going in to Dr. R.'s office and signing a medical release form for Dr. K. Then I'm calling and making an appointment with him. Hurray.
I'm a little worried about my pain medication. I only got 20 the last time I filled them so they'll be gone soon. :(
Posts
All Comments
