Wednesday, July 24, 2013

Hypnagogic Sleep & Dreams

While reading the book Left for Dead by Pete Nelson, I discovered the following section of the book on how your body is affected when you don't get enough REM sleep. According to my last sleep study, only 7% of my sleep was REM sleep. I very rarely get restorative, restful sleep. I have never heard of hypnagogic sleep/dreams before reading this book, but it explains very closely (just a bit more severe than mine, obviously!) how my sleep feels to me. 

The book, Left for Dead, was about the sinking of the USS Indianapolis on July 30, 1945. Book description from Amazon.com: "Just after midnight on July 30, 1945, the USS Indianapolis was torpedoed by a Japanese submarine. The ship sank in 14 minutes. More than 1,000 men were thrown into shark-infested waters. Those who survived the fiery sinking—some injured, many without life jackets—struggled to stay afloat in shark-infested waters as they waited for rescue. But the United States Navy did not even know they were missing. The Navy needed a scapegoat for this disaster. So it court-martialed the captain for “hazarding” his ship. The survivors of theIndianapolis knew that their captain was not to blame. For 50 years they worked to clear his name, even after his untimely death. But the navy would not budge—until an 11-year-old boy named Hunter Scott entered the picture. His history fair project on the Indianapolis soon became a crusade to restore the captain’s good name and the honor of the men who served under him."

Lack of REM sleep/Hypnagogic Sleep and Dreams

"Many of the men went 'out of their heads,' to varying degrees, for varying lengths of time, from simple sleep deprivation. Hallucinations, compelling fantasies, obsessive thoughts, uncontrollable fears and emotions, delirium, hopelessness and despair are all expressions of psychic damage, and during sleep is the time when the psyche heals and repairs itself by dreaming. Without sleep, microscopic psychic injuries can rub and chafe and become infected too. 
"It's not just any kind of sleep that the mind needs to repair itself. The deepest sleep we experience, perhaps a dozen times a night, is called Rapid Eye Movement, or REM, sleep. It's also the time when our muscles become totally relaxed, to the point where we can no longer move. REM sleep is absolutely essential to our well-being. In a pioneering study of REM sleep done at Stanford University, rats were deprived of REM sleep when they were placed on an overturned flowerpot in the middle of a bucket of water. The rat being studied could balance on the pot as long as it had muscle tone, even fall asleep, but as soon as it entered REM and lost muscle tone, it fell off the pot and into the water. After a few days, the formerly docile laboratory rats turned into hyperaggressive, psychotic rats that fought with one another and bit the lab workers who were trying to handle them. What happened to the men in the water was similar to what happened to those rats. The men wearing life jackets who tried to sleep found that as soon as they lost muscle tone, their faces would fall forward into the water, waking them up and depriving them of REM sleep.
"When men could doze off (and never for more than a few minutes at a time) they experienced a much lighter, less restorative kind of sleep called hypnagogic sleep. Whereas REM sleep brings with it dreams unrelated to current experience or daily life, hypnagogic dreams at the onset of sleep take place in the borderland between sleep and wakefulness, and correspond more closely to recent events in the subject's life, fusing reality and fantasy. Hypnagogic dreams tend to be primarily visual in quality, hallucinations that seem, to the dreamer, to be quite well organized and internally coherent, bizarre fantasies that nevertheless make perfect sense somehow. They are also dreams we feel we can participate in rather than simply observe. hypnagogic dreams also tend to express a heightened awareness of the body's position or condition, dreams where, for example, if your arm has fallen asleep in bed, you might dream your hand has become encased in concrete and you can't lift it. (Nelson, 79-80)."
Book excerpt from Left for Dead, by Pete Nelson.

Saturday, July 6, 2013

RIP Sgt. Daniel Somers

For information about his suicide, please visit here.

Veteran Daniel Somers came home from Iraq and was diagnosed with fibromyalgia, along with traumatic brain injury, PTSD, Gulf War Syndrome, and other health problems. He committed suicide on June 10, 2013.

From the above link:
"My body has become nothing but a cage, a source of pain and constant problems. The illness I have has caused me pain that not even the strongest medicines could dull, and there is no cure," Somers wrote in his note.
"All day, every day a screaming agony in every nerve ending in my body. It is nothing short of torture. My mind is a wasteland, filled with visions of incredible horror, unceasing depression, and crippling anxiety."
It's so sad that these conditions have not been researched further, but I'm thankful they are paying more attention to them. So much is unknown, so it's so hard to treat the patients!

That quote struck me hard. I feel that way every single day. I've always been bright, with my head always in books... But now I can't focus on anything. I had to drop out of college, 3 semesters away from my BA in Sociology (to do patient advocacy, preferably). I've spent the past three years living in my parents' house, unable to work or go back to school. I'm losing my mind!

I really hope this will help bring attention to conditions that they don't know how to treat correctly...

I'm praying for all of Sgt. Daniel Somers' family and friends. I cannot imagine what you are going through, and that's exactly why I'm still here. I'm scared that things will get to that point for me... Thank you for releasing his note to help bring attention to this!

Sgt. Daniel Somers was a veteran of the Iraq war and completed over 400 combat missions. It's so sad that such a distinguished man and his family had to go through this. I feel the need to link to his suicide note, as it was published with his family's permission.

Stories like this are EXACTLY the reason I want to become a patient advocate and help others who suffer from pain conditions or other conditions that are so hard for healthy people to understand. When I was 14 and diagnosed with fibromyalgia, or 16 and told I was permanently disabled by my doctor, I wish I had someone to talk to that -actually- understood fibromyalgia. I want to help people like that.

Sunday, June 30, 2013

Teas that help fight night terrors & an update!

Hi everyone!

I'm back from staying with my best friend/'sister' and her family in St. Louis for two and a half weeks. I left the morning after the anniversary of my mom's death. I just couldn't handle being in my house... She passed away in our living room, so I can't even sit in there usually.

While I was in St. Louis, my best friend (who used to work for Teavana), introduced me to two different teas from Tea Forté -- Lemon Vervain (also known as Lemon Verbena) and Lemon Lavender. Both of these teas have really helped me sleep!

According to WebMD, Lemon Vervain/Lemon Verbena can help with:
Lemon verbena is a plant. The leaves and the flowering tops are used to make medicine.
Lemon verbena is used for digestive disorders including indigestion, gas, colic,diarrhea, and constipation. It is also used for agitation, joint pain, trouble sleeping (insomnia), asthma, colds, fever, hemorrhoids, varicose veins, skin conditions, and chills.
In foods and manufacturing, lemon verbena is used as an ingredient in herbal teas, as a fragrance in perfumes, and as an ingredient in alcoholic beverages. 
How does it work? 
Lemon verbena contains a substance that might kill mites and bacteria.
It truly has been letting me sleep much better than I have in a long time! Both teas are loose, so you will need a tea infuser or something similar.

If you are planning on trying the tea out (25 servings for $8!), please send me a DM on Twitter or leave a comment here. If you use a referral, we both get a $5 credit to the site! Each account can only recruit 5 people (to limit how much people can make through referrals), but I could really use the credits, since disability still hasn't come through and my dad's work is moving from Illinois to Ohio, so he's trying to find a new job.

Please let me know if you've tried these teas and if they've helped you! I'd much rather drink a cup or two of tea at night rather than take medication -- and I know that this feeling is shared by many spoonies.

In other news, I broke 2,000 followers! I'm in shock! My significant other, Kolton, sent me the link to the BBC article on The Spoon Theory by the ever-so-lovely Christine Miserandino (@bydls), the woman who runs ButYouDontLookSick.com, only moments after it was posted! It seems I broke the story on Twitter -- I've had so many RTs! Thank you all so much for helping me spread the word about The Spoon Theory. As someone who has an invisible illness, The Spoon Theory has helped me explain to my teachers in high school and college about what it is like to live with one.

I'm planning on beginning to start blogging regularly again! Hopefully I can stick to it this time, lol!

Love you all!
SpoonieJen

Wednesday, March 20, 2013

How much longer can I keep trying to pull myself back together again?

Just emailed this to Kolton. Too tired and in way too much pain to edit.


I
 awoke next to the bedroom fire again. My lower half was still wrapped up in a towel, and I was sitting on the edge of one damask-covered chair, bent over at the waist, with my torso draped across a stack of pillows on another damask-covered chair. All I could see was my feet, and someone was applying ointment to my back. It was Marthe, her rough strength clearly distinguishable from Matthew's cool touches. 

"Matthew?" I croaked, swivellimng my head to the side to look for him.
His face appeared. "Yes, my darling?"
"Where did the pain go?"
"It's magic," he said, attempting a lopsided grin for my benefit.
"Morphine," I said slowly, remembering the list of drugs he'd given to Marthe.
"That's what I said. Everyone who has been in pain knows that morphine and magic are the same. Now that you're awake, we're going to wrap you up." blahblah

[Note: Book I'm currently reading and what that is from is 'A Discovery of Witches' by Deborah Harkness)

Basically, she's injured badly and needs recovery from this really bad, physically traumatic thing. The thing about the magic is just the book -- it's on witches and such. 

It made me snap. Then go hysterical. Now numb with a migraine.

Peppy freaked the hell out. He ignored hot toast for 15 minutes, choosing instead to sit with me (knowing about the toast the entire time, exploring it to check what it is and still not eating it because he was this upset over me)

I haven't slept in 24 hours. Blah. Want to crash and hard...

----


Why does this bother me so much? Because pain relief is not a real concept to me. There is no relief. Ever. It doesn't matter the drugs or whatever I'm on, I'm still in physical discomfort from my different ailments. The pain hasn't let up in over ten years. I'm so tired...

Kolton and I are in a bad spot relationship wise because I cannot accept that this pain is there. I can't heal. I'm just broken. I can't put the pieces back together again and I don't know if I ever will be able to. I haven't since they broke, and that was a long, long time ago. Hell, that was before I hit puberty. Jesus.

This is the types of mornings where I question everything. I'm in a really dark place and I know my thundercloud will blow away, but until then, I'm in a bad state. My poor rat, he was huffing and puffing he was so upset he couldn't calm me. He's used to being able to calm me down when I start to actually physically cry, at the very least. I was just flat out hysterical for the first time in his memory -- I got him in July last year and the past couple of times this has happened I haven't been near the rat.

The garbage trucks are making a ton of racket. 

I want to scream. I honestly just might do so.

Monday, September 3, 2012

Pessimistic about being optimistic?

I'm sorry I haven't really blogged. I feel like I apologize every time I write a post (I probably do, lol). Life just never seems to stop being so... hectic. I'm still in mourning and the smallest things set me off. My depression and anxiety have been especially bad, including my night terrors. I seem to be constantly sick, as in fevers, chills, butterfly rashes, itchiness (everywhere!), and nausea and/or throwing up. I sleep all the time. Plus I'm getting multiple migraines daily. Ugh.

Peppy around 1.5 months old~ So cute!
I guess it's just one of those things. I need to go get an MRI done of my right hand and then see the rheumatologist again. It's just so difficult to schedule those types of appointments when I can't drive. My goal for the next year is to get off the heavy meds so I can begin driving again... I mean, if I can drive, I can go to school, work, see friends... The possibilities are endless. Instead I sit at home, do yoga (if I can), watch TV/Netflix/Hulu, and sleep. I see Kolton about once a week, sometimes twice.

In happier news, I have a pet rat! His name is Peppy and he lives next to my couch. Right now he's moving around newspaper and shredding it while chittering loudly. Chittering for rats is like when cats purr. Our two month anniversary was yesterday~ I'm guessing he's about 3 months, maybe 2.5 months old. He is a male dumbo rat. He makes me so very happy. He keeps me sane, haha. It actually really helps, having the responsibility of taking care of him. We kind of take care of each other in a way.

I didn't sleep much last night. I fell asleep right after dinner and then woke up around 1:30 AM. It's now 8:08 AM and I haven't slept since waking up. I think it's going to rain... My legs are aching something fierce.

I'm really trying to be more optimistic and more ... happier? I want to be happy. It's just so damn hard. I'm happy when I'm with Kolton, who I'm supposed to see today~! I'm happy when I can actually relax some and am not in major pain, but that is so rare these past few years. 

I feel so stuck.

Love you all~ Hope to hear from you guys soon!

xoxo,
Jen




Monday, June 11, 2012

RIP Mom

Last night at 8:30 PM my mom passed away. I'm so numb. I don't know what to do. I kept trying to fix things, but she went into a coma so quickly... I just didn't get the chance to finish things...

I'm so upset. I just don't know what to do.

The obituary is going to be posted in the Herald (Chicago -- will link on Twitter) on Tuesday. Wake is on Thursday, Funeral is on Friday.

My mom asked me to sing at her wake or funeral before she went into coma.

Blah...

Tuesday, November 8, 2011

Physical Therapy

Somehow I have made it to my third week of physical therapy! It still exhausts me, but I know I'm getting stronger -- even if it is slowly. After each session I come home and pass out. I never realize how tired I am until I sit down. I'm usually asleep within 10 minutes of getting home.

Today I might paint. I don't know why I want to, but I do. I haven't painted seriously in several years now. I don't know what I want to paint, but I can feel what I want to paint, as odd as that sounds.

Writing is difficult. Lately I have been feeling so very uncertain. It's as though my mind blanks out every time I try to express myself. I haven't been talking to anyone and I've been sleeping constantly (which is mainly due to the physical therapy). Perhaps it's the new medications, but I just don't know.

I'm terrified of this winter. Chicago winters are always rough, but this year is supposed to be worse than last year, which was a rough winter. I'm so nervous... My lupus has been acting up badly, especially as it gets colder at night. My cane wrist and shoulders are driving me crazy, along with my ankles. I mean, a LOT of my joints ache, but not like these. It's overwhelming.

All I have done these past three weeks is sleep, and all I want to do is sleep more. My depression has been getting darker and stormier. At my last doctor's visit I cried a lot and told him I want off the medications that aren't helping. But how can we tell...? I'm gaining weight again from the medicine. I haven't been eating a lot -- although I was before. It's odd. I've always been bigger, but I have never really wanted to eat a lot.

I feel hopeless.

Sunday, October 16, 2011

It is as though every time I think things are as hard as they possibly can be, things get worse. Much worse. I've been in this black circle of muck and have been for a year and a half -- longer, to be honest. The same thoughts go through my head, over and over again.

It's hard to even write this. The pain and the fatigue are so bad I can barely move, let alone think clearly enough to type. I've barely talked to Kolton in days and my family have heard few words. I haven't been talking to anyone... Just laying here, crying, sleeping, trying to become numb.

Mom's cancer moved to her brain. We found out last week? I think? Time is really blurred. 10 radiation treatments should get rid of the tumors. I don't know if I'm going to post that... It makes it too real. I've told Kolton and one of my other good friends, mostly because Kolton was at work and I needed to talk and he was there. I feel bad, I keep thinking of all these things I should be doing -- I need to email Sam, I need to call Chris, I need to text other friends out here, I should make sure people are still visiting grandpa at the nursing home like they were before mom went into the hospital... I should be cleaning the house, preparing for any visitors. I should be making sure people are visiting mom. I should be doing my chores and feeding my family. Instead, I lay here. I can't do anything BUT lay here.

Pain levels are even higher than they were before. My whole world is falling down around me and I just can't hold everything up any more. I'm so scared.


Friday, September 30, 2011

What a long week!

It's been a long few months. I have several drafts on here from months ago that I never finished. I really need to finish a post I'm working on about my favorite pain creams.

Last Wednesday my grandfather fell while getting out of bed and hurt himself. He didn't hit his head, but he kept saying that he felt off. We ended up having to call an ambulance to transport him to the hospital to get him checked out. He was admitted as a precaution (he is 95!). All of the doctors were amazed that my grandpa doesn't take any medications other than baby aspirin and a supplement. He stayed at the hospital for a few days and then was transferred to a rehabilitation nursing home. He looks SO much better! After he fell, he kept saying that he felt as though all the life was drained out of him... He was so very pale. But now he has his color back and looks healthier than he has in a very long time. The doctors at the hospital confirmed he has Parkinson's Disease... But we've suspected that for a long time. While he was at the hospital, they started him on a medication for the Parkinson's and the shaking in his hands is almost completely gone! The medication isn't going to slow the progression of the disease, but it will help the symptoms. He looks healthier than I've seen him in a very long time.

These past few weeks I have been very stressed, which has caused a flareup of both my fibromyalgia and lupus. The lupus has been the worst though! My joints are killing me -- especially my ankles and wrists. Other joints hurt a lot too, but not like my ankles. It's awful. My legs have been swelling up like crazy because of it. I found my Nike sandals (with the bumpy, massage-y type sole) which helps a lot. My feet have been swelling to the point where some days I have problems wearing my gym shoes.

Anyway, hopefully I'll post my pain cream post later tonight or tomorrow, depending on how bad my wrists hurt.

I hope everyone is doing well!

Spoonie Love,
Jen

Monday, March 28, 2011

It Never, Ever Ends

Mom had chemo on Friday and was doing okay. It has been about 3 weeks since she got out of the hospital, if my mental calendar is right. Friday night she came down with a very slight fever, but it was nothing serious. The slight fever persisted on Saturday too. However, Sunday morning she woke up with a 102.6 fever around 8 AM. It decreased to around 100.0 degrees by 10. I had a study date at the library with Kolton and so I left the house, with my youngest sister sitting with mom to keep an eye on her. Since her fever was going down steadily and I really needed to get the time in at the library for a paper, I didn't really think too much of it -- especially since my sister and dad were home.

I got a text around 2:30 from my youngest sister, Shelly, stating that mom had been admitted to the hospital for at least the night. Her fever kept increasing and it is better for her to be at the hospital with a high fever instead of at home... Especially two days after chemo. I wanted to go home so badly... I knew I wouldn't be able to do anything and I needed to focus and finish studying, so I stayed out. I was really upset too... Blah...

After I got home, I couldn't fall asleep. I took my sleeping pills, no luck. Melatonin, nothing. I was so desperate by 4 or 5 am that I tried a sip of butterscotch schnapps -- nothing. I still haven't slept. It's been ... 27 hours since I've slept. I'm exhausted but just can't sleep, even though I am running on empty. I doubt I'll get sleep for quite a while, I'm just too anxious. She was hospitalized only 3 weeks ago... I'm really scared... I know she is fine, but... I can't help but worry.

I can't even go visit tonight because I have a slight fever and a very sore throat. I was sick all last week with a cold or flu thing, brought on by the Methotrexate (stupid lowered immune system!), and I'm still recovering. It's not nearly as bad as it was three days ago, but it's still really upsetting. I can't risk getting mom sicker, so I need to stay home. I know that I can do the most here, but still... Grandpa needs dinner and laundry done, I have studying... I need to clean the kitchen and bathroom... All I want to do is cry though...

Mom isn't going to be home tonight, they still don't know what is causing the fever. Hopefully she'll be home tomorrow...

Can I please just get a break? People I don't really know keep telling me that God won't give me more than I can handle, but I don't think that's true. I'm breaking under all of this stress and worry ...

Monday, March 21, 2011

Confusion

Last Wednesday I had a doctor appointment... It was confirmed that I do have an autoimmune disorder. :( He said that I have a "diffuse connective tissue disease." He said that the methotrexate would not affect the fibromyalgia, which definitely points to an autoimmune disorder then. I haven't read up on it yet, I'm honestly scared. My doctor said that the methotrexate will keep it mild (hopefully) and keep it from becoming full-blown.

I'm honestly just scared. I knew something else was going on with my body, even if I didn't know what. Blah.

Wednesday, March 16, 2011

I keep meaning to write, but life has just completely overwhelmed me... This past month and a half has been sheer hell. I was in a 2 week bed-bound flare, then mom was admitted to the hospital for a week, and now my Great Aunt Helen has died. I didn't know her very well, but I only have pleasant memories about her. She was always very sweet. She would send us cards with the most beautiful handwriting, updating us on what has been happening... She died the other night. The funeral is on Thursday morning. I am honestly really nervous... My pain spikes whenever I am stressed, and I know tomorrow will be -major- stress...

My 2 week bed-bound flare was horrid. My mom was also sick, and I felt so guilty being unable to really help around the house or cook. I became really behind on my schoolwork, especially after mom's hospitalization. Mom was hospitalized due to some chemo complications... There was swelling near/in(?) her lungs, which made it hard for her to breathe. She is thankfully fine. It was a really hard week, the week she was in the hospital. I am terrified that something is going to happen and I would have to say goodbye... I don't know if I could handle that... It was hard enough seeing her so weak... I am crying just thinking about it. I love my mom so much, even though we do have our rough patches, and I just want her to heal and become better. She deserves so much, I wish she wasn't so sick... It's really hard on everyone, but I cannot imagine how hard it must be on her. I keep her in my thoughts and prayers all the time, and do my best to help her with whatever she needs, but I wish I could do more...

I have to keep taking breaks while typing because my hands are aching so much. The weather forecast is saying rain tomorrow, which explains how achy I am. On doctor visit days, I always seem to get migraines, tremors, and just overall worsened pain. It's very difficult for me to talk about how sick I have been, especially in front of my dad. I try and keep everything inside, not really telling my parents how hard it is to live like this... I don't tell anyone. I talk somewhat about it on Twitter and here, but that is the most I do. I try and journal, but I only become frustrated with myself. Even blogging becomes difficult, mostly because I look at what I am writing and become angry with myself. I notice how much I focus on myself, how many times I use the word 'I.' The doctor visits are the only time I talk about how hard it is and what is going on with my body. My dad already has enough on his plate, he doesn't need this stuff too... I think the anxiety from having to have my dad hear all of it is what sets me off the most. I loathe having my family see me like this. I want to be healthy and normal...

In better news, the methotrexate may have started working! I am really excited about this. The other day I had so much more energy and the pain wasn't as bad. Even now, it's not as bad as it could be (or usually would be). I'm doing my best to not place too much hope in it, but I can't help myself! The fact that the medicine may be starting to work has me extremely nervous though... What does it mean? Do I have an autoimmune disorder, did the tests give me false-negatives? What other treatments are in store? What autoimmune disorder do I have, if I have one? It's all so scary...

Monday, December 27, 2010

Cooking Away My Worries...

I don't like who I am. I am spoiled. I expect too much from people. I feel empty and depressed... I'm spiraling down, farther and farther.

So I decided I am going to cook until I can't feel any more.

Tonight I'm using our leftover ham to make a cheddar and ham quiche. Instead of a pie crust, I am using hash browns. I didn't have any frozen hash browns, so I julienned the potatoes up real nice and mixed them with some  minute diced onion. My hands are aching, but I just... I can't. I had a lovely Christmas with my family, I saw Kolton and his family last night. Kolton and I had a great day yesterday. Yet today I feel empty and sad. I feel like I'm just floating along, not able to grab on anything to hold me steady.

My doctor took me off of Pristiq and started me on 40mg of Prozac. I just started taking the Prozac a few days ago after the Pristiq left my body. I have an eagle eye on my depression and I have asked Kolton and my best friend to keep a close eye on me, to make sure that I don't get too depressed. I'm scared.

Tomorrow I want to make split pea soup. Maybe Wednesday. Tomorrow my family might be going sledding with my uncle and his two daughters. I don't know if I am yet. Thursday mom has chemo again.

I hate who I have become and I don't know how to change.

Wednesday, December 1, 2010

Anger and Frustration

A few days ago, I had a major flare begin. All I've been doing is lying around, stretching when I can, and avoiding extra movement as I can... The pain levels are extremely high. I've been doing my best to help around the house, but I have been a lot less active than I normally am. Every time I move I have to avoid screaming... Over the years I have become very good at holding a mask up and not showing the pain. Most people are surprised to find out how much pain I really am in because I am so good at hiding it. I haven't had a choice about hiding it, it's the way it has had to be. I feel like I look dead. I can't feel emotion when I'm in this much pain... I just want to cry. I've had people questioning if I really am in a flare and it hurts so much to have to defend this to them... I just don't know what to do. Chances are I am reading way too much into this and taking it too personally, but I just can't help it. 

Since the flare began, I have noticed that I am extremely irritable. I am generally not an angry person, but I have been getting flashes of anger over little stupid things... Things that really should not be bothering me. It scares me. I shouldn't be angry like this. I just want to scream.

I am so frustrated with all of this. I saw my neurologist on the 24th and told him how I have been really worried that there is something else going on with my body other than fibro. My doctor ordered a full lab work up and a metabolic panel. I see him on the 22nd. I am so nervous... I'm very scared that something else is going on. I really should not be this sick with just fibro. Ugh.

Right now I cannot even describe how upset I am in general. I am having such a hard time coping with everything lately. This snow is just killing me and I have not reached the peak of this flare yet. Blahhh...

Tuesday, November 2, 2010

Breakthrough Pain

Lately I have been noticing a whole lot of breakthrough pain. My stress level is around a 10/10 and things are just crazy in my life. I know that my stress level definently attributes to my pain level, but this is just getting ridiculous.

My doctor has had me on Embeda for every day treatment and then MSIR for the breakthrough pain. Last month I took -way- less MSIR than usual, but I have noticed that the amount I am taking it is increasing again. Even on the Embeda, MSIR, and Robaxin, the pain is skyrocketing. I am having a lot of trouble moving, especially due to my lower back and hips.

When I went to my neurologist's last week, he gave me six or seven (I am thinking seven -- not quite sure!) steroid shots in my neck and back. The trouble spots that he injected are starting to loosen up and I definetly have more mobility in my neck, but the pain is just as bad... The muscle tension is more than it has been at this point in the steroid schedule. I am very concerned.


My depression is also getting worse and worse. I keep applying for jobs but I have not heard from anyone. I will be starting online classes at the local junior college in January, but until then, I have nothing much to do... I clean the house, cook dinner, do laundry, etc, but I feel so empty. I have been sleeping more and more, but feeling more tired. I just want to cry my eyes out but I don't even have the energy to do that. I feel like such a disappointment and a failure. Nothing I do helps those feelings. I have been considering going back to therapy, but it is so expensive and I can't drive. I don't want to bring up any of these things to my family because I know that they have enough going on with my mom being so sick...

I just feel so frustrated. I have been doing my best to mask my pain and not let anyone know how much it hurts to even breathe so they can focus on my mom... I let it slip for a second and I get questioned, then I feel as though I suck as a person for letting it slip.

I just don't want to live like this any more. I have been meditating more, journaling, doing more yoga... Nothing helps. I just can't do this.

Tuesday, October 26, 2010

Mom's Surgery

Mom's chemo pills haven't been working, so the doctor has decided that she needs to go back onto IV chemo. Right now she is getting her port put back in. She got her first port removed about nine months ago because of a blood clot. She starts back on chemo on Thursday. I am freaking out... I just don't know what to feel. I'm so scared my mom is going to die. I know that she is doing better, but it still terrifies me.

I've been crying a lot lately. Stress is just overwhelming me. My eye twitch came back this morning... My rash is getting worse. Pain levels have skyrocketed due to weather and stress. Ugh...

Please keep my mom and my family in your thoughts/prayers...

Saturday, October 23, 2010

Stress and Depression Aren't a Good Mix...

I'm so sorry I have just kind of dropped off of the earth recently... Life has been difficult... Not as difficult as it could be, but I have been struggling a lot. The previous anti-depressant I was on, Zoloft, backfired on me and my depression increased at least doublefold. My doctor took me off of it and started me on Pristiq about 3 1/2 weeks ago. Four days ago I broke out into a rash. It is on my arms, legs, and now my face. It is so itchy! My depression hasn't really gotten any better... All I want to do is lay in bed. I have no interest in anything else. I have been going on cleaning sprees and forcing myself to go out just so I can try to get myself happier... It is a momentary distraction. It is getting harder and harder to get myself to leave my bed. I don't even have the energy to cry much. I just don't want to do this any more. I just want to be done... I see my doctor next week and I pray that he can fix this. I know I should call and tell him about the rash, but I know they'll tell me to stop the medicine... But what if it starts working that day or the next...?

Thursday, September 30, 2010

Anti-depressants

Whenever a patient takes anti-depressants, there is always the risk that the medication will backfire. Five weeks ago, I began 100mg of Zoloft (I had been on 50mg for about six months and it wasn't working well enough). About two weeks ago, the 100mg started kicking in and my depression increased and increased. All I have been doing is lying in bed staring off all day. I was starting to get extremely scared... I just felt so empty and desolate. It was horrifying.

I saw my neurologist last night and he feels that the anti-depressant backfired. To fight this, I was removed from the Zoloft and I was put on 50mg of Pristiq. We are really hoping that this will help... But there is always the chance that this will backfire too. This is the third or fourth anti-depressant that I have tried, so it could be worse, but I am really praying that this will begin helping...

Has anyone else gone through this? How did you deal with the depression when it got extremely bleak?

Thursday, September 23, 2010

Interview!

Hi all. Tuesday I did an interview with ChronicBabe.com's Jenni Prokopy and I just received a copy of the video! This opportunity was great and Jenni was amazing to talk to. I am so glad I got to do this!

Beware - the audio is pretty loud, so you might want to turn down your speakers a tad!


Wednesday, September 22, 2010

Anger

Right now I am furious. I can't find my water bottle which I had only an hour ago. I haven't moved from this spot. I have looked everywhere and it's just gone. I can't remember what I did with it. I'm angry with my sprained knee. I'm angry with the pain, the fatigue. I'm stressed beyond belief. I'm angry I'm not in school, that I still don't have a job. I'm angry with my family and friends for not understanding more. But mostly, I'm livid with myself.

I enable myself. No matter how bad the pain is, I still believe that I will wake up tomorrow and everything will be better. The pain will be gone. I will have a full night's sleep that actually restored me. I get false hope and then get crushed, even when I know that I shouldn't have gotten my hopes up. I enable myself by overdoing it constantly and then being surprised when I can't move the next day. I do too much even when I can't really move.

I sprained my knee again. It had been hurting for a few days in a non-fibro way. I've been using my cane/wheelchair to prevent injury. This time I was sitting in Kolton's car and we were talking and laughing. I must have turned my knee just the wrong way when I shifted in my seat or something. I can't figure any other way out. We sat in the car for at least 20 minutes (it felt like a lifetime) with me screaming in pain. It felt as though someone had stabbed the top of my kneecap with a red-hot butcher knife. It was so bad that I was hitting myself, trying to pull out my hair, just to distract my body. I didn't realize that I was doing these things until Kolton grabbed my arms. I screamed and sobbed until the meds finally kicked in. This happened two days ago.

Today I decided it would be smart to clean my room. I mean, organize, make my bed real nice (I found my heated blanket though! I got it all set up which is definitely a plus!), scrub the wall where I spilled something, pick up stuff from the floor, go through a bin of old artwork and belongings... The list goes on. I did this with a sprained knee and a very sore back and neck. I did this because I am a moron. I knew that I was in too much pain to do this. I can't even put full weight on my leg without nearly collapsing. So why did I do these things?

I hate myself a lot of days. I have major anger, denial, and depression issues. I need to find a new therapist, one who is near this house. I need to start physical therapy for my fibro. I need to find a job... But I'm scared. I'm scared of all the change that has been happening. I'm scared of my family seeing me in this much pain, of my baby sister hearing me cry out in my sleep because the pain is too much; of her lying there awake because I can't sleep again because the pain is too bad. I'm scared of my mom dying. I'm scared of my family falling apart moreso than it already has. I'm scared of being forgotten. I'm scared that I won't get a degree...

I just don't know what to do anymore. I have lost most of my friends. I push everyone away and try to make them leave so they don't have to see me like this. I don't want to lean on anyone for help. I can think of four people who are still willing to talk to me, hang out with me, and that is slowly going down to two. I miss my friends...

I've been crying for the past half hour or so. I'm just frustrated with my situation, with my life. I'm so tired... I just want real sleep. The past few nights I have taken a sleeping pill only to lie awake all night long.

I just want my life back.


[Edit: I finally found the stupid water bottle. It was hiding in a pillowcase. How it got there, I have no idea.]