Moving with Fibro

Well, moving is over. Thank goodness. Moving is stressful when you feel healthy. With Fibro, it was pretty much the worst thing ever. It was unexpected, making it even more stressful. So I figured I would share some tips with you, if you ever have to move with fibro. Or with out, some tips are just universal.

1. Find a friend or 2 to help you. This is pretty much the golden rule of moving with fibro. Many of the tips that follow require a buddy, so find one. Bribe them with food, or goodies.

2. Make sure you have all your packing supplies before you start. Having to run out for more boxes, tape and whatever really uses valuable energy.

3. Give yourself ample time to pack. Sometimes this isn't your choice, but try to get enough time to pack slowly.

4. Take breaks. You will do yourself no good by wearing yourself out and sending yourself into a flare and not getting anything done. My formula is 1 hour packing, 15-30 minutes rest. Even if you don't feel like you need it, take 10 minutes or so to breathe. It will keep you energized.

5. Stay hydrated. Just do it.

6. Have your buddy help you pack things like dishes, things that aren't personal or you need to know where they are.

7. Label boxes. I didn't, and I can't find anything. :-(

8. No heavy lifting. NO! This is why you have a buddy. They will lift boxes with books and things. Lift clothes, and small things. Heavy lifting is bad for fibro bodies.

9. If you have stairs have your buddy bring things downstairs. I went up and down the stairs so many times. We've been done moving for over a week now, and I am still paying for the stairs. Use them as minimally as possible, your knees will thank you.

That's all I can think of! Do you have any good tips for moving that you think should be added?

Spoonie Moving

Moving has been rough, as one can expect. I feel like I have been going and going for days now. Packing, loading, unloading, unpacking and bringing the empty boxes back to the apartment to start the process over. I have been making sure to take breaks to keep from sending myself into a flare. Been drinking a lot of Gatorade too. We've been eating out a lot, which is hard on a GF diet and a 1200 calorie diet. So far I've managed to do well with both though. We at at "home" (future in-laws house) last night and it was so good! We got all the big stuff here with the help of a good friend and a UHaul.

Other than that I have been having a fair amount of pain. So I just have to pace myself.

And all my lolita clothes take up all the space in the little closet we have in the bedroom with no room for any other clothes. I have t-shirts and pants hanging on a rolling clothing rack. Jon's aren't hung up yet. :-(

Original Poetry Post: Sick Girl

My camera is still in the car, so no Halloween post yet. So here's an original poem by me, about how it feels sometimes to be sick everyday. AMS are my real initials, and this poem is my intellectual property. Please do not use it with out permission and crediting.

Sick Girl Written June 4, 2010 (c)AMS

Sick girl, made of useless aching fibers

Always sleeps, but is never rested

Sick girl feels dizziness invade her day

Nothing gets accomplished

Sick girl needs a hug but is always alone

No one knows how she really feels

PS Tomorrow I have an appointment with a pain clinic! My neuro referred me to them. I hope it does well!!

Everybody Etsy!

Welcome to Everybody Etsy! the (hopefully) weekly Etsy spotlight. I will be featuring different things I find on Etsy that fit into the lolita aesthetic and that are for fibro awareness or would benefit a fibromite.I feel like this fits into my "Season of Lolita" post. It's simple and elegant, and I would love it to be a staple of my winter wardrobe. I am a winter princess, born in January. The girl that makes these makes them in different colours and sizes to fit your needs!
Buy it here!

Call me a jewelry junkie, but here's another pretty bracelet! This is one that I feel could be worn everyday, dressed up or casual how ever you like!
Buy it here!

Do you have an Etsy Store or know of an Etsy store that you want to see featured? Email me at fibrolita@gmail.com with suggestions!

Fibro Product Review: Sombra Warm Therapy

This is the second sample I tried from RNA. Let me say I was not impressed. I hated the smell, sort of made me want to vomit. It's a lemony/orangy and menthol smell. Yuck. After holding my breath a bit while my fiance continued to rub it on my back I noted that it wasn't doing anything. So I waited. Nothing. About 10 minutes later it got cold, and it was unpleasant. It was like someone had rubbed tooth paste on my back. I sort of hated it and wanted to wash it off. It didn't last long though.

It wasn't warm as the name indicated. It was terrible.

The ingreients are: aloe vera extract, capsaicin, carbomer, decyl polyglucose, deionized water, graperuit seed extract, green tea extract, orange peel extract, queen of the prairie extract, rose water, sodium hydroxymethylglycinate, vegetable glycerin, witch hazel, yucca extract

If you are still interested in purchace, you can find info here: http://www.sombrausa.com/howtobuy/consumers.htm
---
From my last post about China-Gel:
FibroGirlKate says: "I've used Biofreeze, Fibromyalgia024, Salon Pas, and Aveda's Blue Oil. Fibromyaglia024 is my absolute favorite, but it has a very strong smell (not bad, probably about the same as Biofreeze). I like Biofreeze gel--it absorbs quickly. Salon Pas patches barely smell, but don't last as long as the package claims. Blue oil has a great smell, but just makes a dent in the pain. It's perfect for use at work."
I've got a sample for Biofreeze, so that will be next. I've also ordered a sample for SalonPas. I had to hold off on the sample for Fibromyalgia024 because I have to pay for shipping, and I can't afford that right now. I've also ordered about 8 other samples that were free and will be reviewing them as they come in.
As far as FibroGirlKate, she's got her own blog, just click her name up there to check it out! It seems very informative and interesting. I know I've added it to my Google Reader list!

Want to suggest a product I should review? Want to post your own experiences? If so just comment below or email me at Fibrolita@gmail.com

I hope my reviews can help you out a little! Have a wonderful and pain free day!

Everybody Etsy!

Welcome to Everybody Etsy! the (hopefully) weekly Etsy spotlight. I will be featuring different things I find on Etsy that fit into the lolita aesthetic and that are for fibro awareness or would benefit a fibromite.


Fibromites really appriciate a good pillow. We nap a lot and have a hard time getting comfy. My house is full of little pillows. This one also fits in to the lolita aesthetic with it's pretty print. Perfect for fibrolitas everywhere!
Buy it here!


This is a super cute, almost Deco style ring. It's some thing I would wear with my outfits for a POP of colour. Hello Kitty is a huge favourite of mine! And do I see a hint of purple for fibro awareness?
Buy it here!

Do you have an Etsy Store or know of an Etsy store that you want to see featured? Email me at fibrolita@gmail.com with suggestions!

Fibro Product Review: China Gel

At my second appointment with RNA we talked about non-pharmaceutical ways to manage pain. I was given a sample of China-Gel to try out.
I tried it out that night and just LOVED it! The smell is a little strong, but not unpleasant in my opinion. It's like Vicks Vaporub with a bit of lavender in it. It brought my back pain from about an 8-9 to a 5 in about 4 minutes flat. After that it continued to have a soothing "cool-heat" for about 30 minutes. I call it "cool-heat" because that is how it felt to me. It was cool, but kind of warming at the same time. It felt great on my muscles.

The active ingredients are: menthol, camphor, ginseng extract, angelica extract, lavender oil, aloe vera, and witch hazel.

You too can get a free sample! All you have to do is send your name, address, and $1 in shipping and handling to them. Click here for more info.

After trying your sample you may want to order some, I know I do!
Order China-Gel

The only downside is that this is a bit on the more expensive side. I was given some other samples that I will be reviewing as well.

Do you know of a non-pharmaceutical pain treatment that has worked for you? Have you tried China-Gel? Tell me about it, and I will feature your comments in the next post!

Everybody Etsy!

Welcome to Everybody Etsy! the (hopefully) weekly Etsy spotlight. I will be featuring different things I find on Etsy that fit into the lolita aesthetic and that are for fibro awareness or would benefit a fibromite.
Today we have a pair of super cute cotton bloomers. A staple of lolita fashion and great for the fibromite. They are soft cotton, and elastic for comfort. They are great for lounging around the house it. Bloomers are my favourite kind of comfy clothes on days that I am not feeling great.
Buy them here


Next is a lovely, purple beaded bracelet with a ribbon. Wear it casual or dressy, and help spread awareness.
Buy it here


Do you have an Etsy Store or know of an Etsy store that you want to see featured? Email me at fibrolita@gmail.com with suggestions!

My Fibro Family: SamsStories

This week we are hearing from Sam, or samsstories on Twitter. She is a mother, wife and fibromite.

1. What's your age? 36
   

2. What's your gender?-- Female
   

3. Where are you from?-- San Diego, Ca
   

4. Do you have a blog?-- I have two blogs. One is http://sams-stories.com, and it is a personal blog. The other is http://chickensibling.blogspot.com. I created it to keep in touch with family and friends when I found out I was pregnant in 2008. It is only about my children and is G-rated. My Twitter user name is samsstories.
   

5. When were you diagnosed?-- I was officially diagnosed in April 2007, however I've had fibromyalgia since 2000. I knew it was fibro early on because my mother and a good friend have it as well. I didn't see the point in getting diagnosed as there wasn't anything I could do about it, but I'm glad I did. Medication does help a bit.
   

6. How has your family and friends reacted?-- I think most ignore it, except for a few friends and my immediate family. My husband has always known me with fibro so he doesn't notice any difference. He takes excellent care of me. I don't think many partners do this as well as he does.
   

7. What is the hardest thing about fibro for you?-- The hardest thing is wanting to do so much more with my life and for my family. Knowing that I could do more, but I will pay for it with more fatigue and increased pain. In the end, if push myself too hard I do less overall. I hate that part, I wish I could overcome this with sheer will.
   

8. What are some of your coping tips?-- I've learned to say no to events that are going to use spoons and not benefit me in any way. It sounds selfish, but if I'm not going to enjoy myself or my immediate family isn't going to have fun I'm not doing it. I've lowered my expectations for myself so that way I'm not as disappointed with what I accomplish. Some days I just try to get through it and hope the next day will hurt less or I'll have more energy.
   

9. What is the one thing you regret having to give up from fibro?-- I didn't finish my teaching credential because of my fibro, and there is no way I could work while raising children. I don't want to work at this point because my youngest son is 18 months old, but what if my husband lost his job? I'm useless financially.
   

10. What is something good you've gained from fibro?-- It sounds cheesy, but I've learned to appreciate the little things more. I nursed my youngest son for 18 months. Even though it has severely impacted my ability to take medication I have cherished the time I nursed him because I fought so hard for it. I'm proud of myself.
    

11. What changes have you made to make your day to day easier?-- I take breaks frequently, and I nap whenever possible. I've learned to make changes in my responsibilities to optimize my energy. For instance, I rarely cook because of the length of time it requires me to stand. You can't take a break in the middle if suddenly you get exhausted. But I can mop the floor in stages. Or fold laundry while sitting on the couch. Days that I really want to go grocery shopping with my husband but I can't physically do it I ride in the little motorized carts. It isn't great for my pride, but at least I'm out of the house doing something.
    

12. What advice do you have for the newly diagnosed?-- Keep trying different therapies, medications, and keep informed. Remember that there is not one single answer that will solve your pain and fatigue. If it sounds too good to be true, it probably is someone trying to scam you. Ignore doctors that don't believe in fibromyalgia.
    

13. Anything else you want to add?-- Finding other people with fibromyalgia (even on Twitter) is helpful to my psyche. Seeing that I'm not the only one that is exhausted an hour after I get out of bed means that I'm not alone in this struggle.

Do you want to be a part of the fibro family? It's easy! Email the answers to these questions in your own words to fibrolita@gmail.com. I always welcome new friends to support and talk with.

RNA- The Fibro Clinic

Last week on Thursday I went to the RNA clinic in Edina, MN. The initial visit is 2 hours, and they go over your whole life with fibro. They listen to your symptoms and write them down and give you pointers on how you can make things better. I left the appointment with a folder full of articles on Fibro, sleep and diet. They informed me that I have hypermobility (pretty flexible) and that has been connected with fibro. They also did a more in depth tender point test than what my neuro did, which opened my eyes a little. I've had mysterious hip pain since about age 12-13 or so. No doctor could figure out why. I've done PT for it and no help has come. I just learned to live with it. When she did the tender point test, she touched the area on my hips that always hurts. It hurt terribly, but I was happy to finally have an answer to that hip pain.

In all I was very happy with the experience with the 2 ladies that run the clinic. They understand fibro in a way my neuro has never expressed. They know it's hard to get up and exercise. They understand the feeling of loosing my former life. I go back again to talk with them and learn more of my condition on Wednesday.

Before I wrap up this post, I wanted to point you in the direction of this post: A Spoon for a Friend. Not because the poster mentions me, but because it's an understanding blog from a non fibro sufferer. If more people could be as understanding as she is, our lives would be easier.

Looking for your own Fibro specialists? It's a short Google away, but I can take some of of the leg work out for you.
FM Aware's List of Doctors: http://www.fmaware.org/site/PageServer?pagename=resources_hcProviderDirectory
Just find your state and go from there.

Fibromyalgia and Fatigue Centers: http://www.fibroandfatigue.com/treatment-center-locations-and-contact-information.html

Everybody Etsy!

Welcome to Everybody Etsy! the (hopefully) weekly Etsy spotlight. I will be featuring different things I find on Etsy that fit into the lolita aesthetic and that are for fibro awareness or would benefit a fibromite.

First up we have a Microwavable heating pack. You can pick your choice of natural, aromatic ingredients. I can even be used for cold therapy. I picked this particular pack for it's Victorian-esque pattern. Very fancy.

Buy it here: http://www.etsy.com/listing/52920211/microwavable-therapy-hot-and-cold-wrap?ref=sr_list_1&ga_search_query=fibromyalgia&ga_search_type=handmade&ga_page=&order=&includes[]=tags&includes[]=title

Next we have a BEAUTIFUL jewelry set. It's vintage styling is very elegant and unique,. The purple gems and little ribbon signify fibro awareness. A very classy piece that people will ask you about.Buy it here: http://www.etsy.com/listing/39820388/lupus-epilepsy-cystic-fibrosis?ref=sr_list_1&ga_search_query=fibromyalgia&ga_search_type=&ga_page=&order=&includes[]=tags&includes[]=title

Just 2 this week! I'll keep searching and come up with more Etsy finds for you.

Do you have an Etsy Store or know of an Etsy store that you want to see featured? Email me at fibrolita@gmail.com with suggestions!

My Fibro Family: ALydiaByAnyName

The internet has helped me meet many wonderful fibromites. These people are intelligent, supportive, caring, and so much more. I call them my fibro family.

First person I have interviewed is ALydiaByAnyName from Twitter. She is an artist, and writer. She keeps things positive.

1. What's your age?-- I am 19 years old.

2. What's your gender?-- I am female.

3. Where are you from?-- I'm from Fayetteville Arkansas

4. Do you have a blog?-- I do have a blog, the web address is http://mpdme.blogspot.com/

5. When were you diagnosed?-- I was diagnosed when I was 17.

6. How has your family and friends reacted?-- My mother was absolutely devastated. My older sister also has fibromyalgia, and we've been helping to take care of her and get her help for six years. My family has already been through this and know how difficult it is. I have a lot of support though. As for my friends, the ones I have that went through this with me and have seen my progression are really supportive. They helped me when I started getting anxiety attacks and they know how to tell when I need to rest. The new friends I've made don't really understand it, but they ask me lots of questions and accept it. They're all really supportive.

7. What is the hardest thing about fibro for you?-- The hardest thing about Fibro is probably the way people react. It was really difficult being in school and going through this, the principal didn't want to deal with the fact that I had special needs. There was a great special needs program, and we had quite a few students who were in wheel chairs but because I looked healthy he didn't even want to let me have a reduced schedule even though I had more than enough credits to graduate. If it weren't for the fact that I had a few teachers who had known me for years and saw what I was going through I wouldn't have made it. Also, with trying to get disability I was rejected because of my "age and education". For some reason adults like to think that just because you are young you're healthy.

8. What are some of your coping tips?-- To cope with the way people react to fibromyalgia, I'm incredibly honest. Just tell people up front that you have problems. If they don't understand or believe you and aren't supportive you don't need them. You know who your friends are really quickly when you have a disability. As far as the physical pain involved with fibromyalgia, the main problem I face is the fatigue and the inability to motivate myself to do anything. With pain, I just try to focus on something else and meditate. I can't ignore the fact that I don't even want to get out of bed. What works for me is taking walks, to get my energy up and to feel like I'm accomplishing something. This helps me feel a lot better. It's also imperative you are getting all your vitamins. Vitamin D, B12, and calcium are especially important.
   

9. What is the one thing you regret having to give up from fibro?-- Honestly, I think I've always had some level of fibromyalgia. I've never been healthy, I've never had any energy, I've always been in pain, and I never liked being around people. The only difference now is that it is much worse. I guess in a weird way I'm lucky because I don't know what it's like to be healthy, I don't know what I'm missing.

10. What is something good you've gained from fibro?-- I think it's made me stronger. I have a higher pain tolerance, and I don't let people put me down. I also know how lucky I am I have a support system and friends that understand me.

11. What changes have you made to make your day to day easier?-- The biggest change is taking vitamins and trying to exercise. I also have to watch what I eat since they can cause flare ups. I pace myself and plan out my day more. I have to make sure I get everything done, and I have to figure out the easiest way to do everything. I also cant let myself get depressed about it, because that makes everything worse. I have to learn to talk to people about what I'm going through and to make jokes about it.
    

12. What advice do you have for the newly diagnosed?-- It's not a death sentence. People can live perfectly normal lives. Do a lot of research on what are the best ways to take care of yourself. Stay healthy and eat right. Sit down and reassess your life. What are your dreams? Your goals? It might be more difficult to reach them now but in no way is it impossible. Find a support group and don't try to do everything on your own.

13. Anything else you want to add?-- Everyone's experience of Fibromyalgia is different. Just because you have it doesn't mean you know what everyone else is going through and just because they have it doesn't mean they know exactly what you are going through. For the most part you have to figure things out as they come along. Don't let other peoples experiences define yours, just take what they say into consideration.

Do you want to be a part of the fibro family? It's easy! Email the answers to these questions in your own words to fibrolita@gmail.com. I always welcome new friends to support and talk with.

Fibroversery?

It's August now, and that marks one year since being diagnosed with Fibro. I don't remember the actual date though. So, it's time to talk about how things have changed for me, for better and for worse. I'll use (+) for good things and (-) for bad things.

(+) I am more educated on my illness.
(-) I've had to cut back hours on my part time job.
(+) I've started this blog.
(-) Got denied disability benefits
(+) I've met super amazing people who share this illness.
(-) I don't get out as much as I used to.
(+) I changed neuros to a better more understanding one.
(-) My fibrofog has gotten worse.
(+) I've learned to write things down.
(-) Lyrica didn't help and made me gain weight.
(+) I am off the Lyrica!
(-) My pain seems to be getting worse.
(+) I've found Savella, and I think it's helping.
(-) Had to come off my depression medication.
(+) I am learning to be more positive.
(-) I don't sew as much.

Fibro really has affected my lifestyle. As much as I feel like I am missing out on, I also feel blessed to have met the fibro people I have met. They've helped me learn how to cope, they've been there when I couldn't. We are all connected and I call them my fibro family. With out them, I wouldn't understand this disease the way I do now. I still have lots to learn, and lots of healing to accomplish, but I will get there.

This month I will be posting many links to articles, and blogs I have found helpful. It's a big month for me, even though my fibro symptoms started much earlier than one year ago, this was the month that gave what was plaguing me a name. It's not so mysterious now.

I also want to hear from you, my readers and fibro family. I want to share your stories with the world. If you wish to participate please email me at fibrolita@gmail.com for an interview!

The Day That Wasn't Meant to Be

I woke up very unrefreshed this morning, which isn't new for me. I also felt detached and very annoyed. Should have taken this as a cue to stay in bed. My pain levels were ok, not horrible, not great.

Eventually I checked my phone and noticed a message from my Neuro's nurse. She said that my pain pill, Tylonol with Codine, couldn't be refilled until the 28th. The bottle says to take them every 4-6 hours as needed and contains 24 pills. I found this confusing that it couldn't be refilled since I didn't even get a month's supply. She also wanted me to sign a Narcotics Treatment Consent form. I had no idea what that was. I went down to the Neuro's office to get things sorted out. I guess my Neuro is very reluctant to prescribe pain pills and narcotics to begin with. There have also been a few doctors in the news lately that have been getting in trouble from patients on narcotics. The form basically said that I will not be a drug seeker, and I will not sell my pills. I may have to consent to random drug tests from my Neuro and if I get addicted I can't use alcohol or other drugs. I've never done any street drugs in my life, so I don't really have a problem with having drug tests. I don't see myself getting addicted either. I don't take the pills that often. I have been needing them a little more lately since living in the "Land of 10,00 lakes" also means the Land of Humidity. Humidity and heat and fibro are not the greatest of pals.

Part 2 of my day that wasn't meant to be is regaurding my SSI/SSDI Disabiliy application. As you can guess, I was denied. I know many people get denied their first time, but it just hit me hard. I was counting on this money to be able to pay off bills so that the bill collectors can leave me alone. I counted on it to be able to move, and be closer to the friends I need. I cried about it, and I am still feeling sad. We haven't paid our rent this month because my fiance's hours got cut. We didn't have the money. We still don't I don't know how we are going to pay next month's rent either. I've never been able to do a full time job, the exhaustion just got to me. But ever since the fibro went into full swing, I've had to quit my wonderful job at JoAnn Fabrics. I also recently had to give up my hours at my second, VERY part time job of 11 hours a week at a local game shop that a good friend of mine owns. I feel bad that I am unable to contribute to paying the bills. I know it's not my fault, but I just feel so guilty about us falling into debt while I writhe in pain everyday.

There was a nice thing that happened today. While leaving the Neuro's office a woman complimented my dress. I thanked her and told her I made it myself. She then went on to say how it looks "very Japanese". She vaguely recognised lolita fashion! That made me really happy and hopeful for the future of my line Seraphim Feathers.

I've been doing my best to stay positive, but it just seems like things have been going downhill more and more lately. I think I am going break my diet and have some comfort food tonight and hop back on the positive wagon tomorrow. Sometimes you have to do that when life gets you down, just don't over do it.

My Adventures with Savella: Weeks 2 and 3, Almost a month!

I've been putting off this post for a while now. I noticed that I only have 3 days left of my titration pack of Savella and thought I better get to it!

What can I say though, being at 50mg 2 times a day for almost 3 weeks now has been pretty swell. I haven't noticed any adverse side-effects, other than the appetite suppression. Which is good for getting off the almost 50 pounds I gained while on Lyrica. There is no increased fog like I noticed with the Lyrica. I also think I am having some improvement with pain. Today I sewed for 4 hours or so with no distractions and no pain, almost finishing an entire dress. Inevitably my back screamed "STOOOOOOPPPP!", so I did. I am very happy with what was accomplished and haven't done this well since getting sick. I'd say that is an improvement right there.

So it's not anywhere near perfect, but I have noticed a difference. I think it can only get better from here.

In other news I should be hearing about my SSI/SSDI with in the month, which will really make me feel better about my reduced work hours. Life with fibro is expensive, and very stressful when you can't work as much as you need to. I've also opened up an Etsy store selling clothing I have made. The link is www.etsy.com/seraphimfeathers If anyone here has an Etsy shop, I would love to have a look!

One last thing before I am off: The dress I was working on today is going to be featured, along with 3 other garments by me in Full Fashion Panic at SGMS. I've got until August to finish all the garments, and I feel that with this new found productivity I will be able to do that no problem. :-)

If you have any questions for me about Savella or anything covered in this blog that haven't been answered here please feel free to email me at fibrolita@gmail.com

Clothing Comfort

When you live with chronic pain comfort is key no matter what fashion you are into. Today I am going to share some of my tips for dressing comfortably that can help you no matter what your style is.

Fabrics
Choose your fabrics carefully. Different textures feel better on the skin than others. I wear a lot of cottons and other soft fabrics. Allodynia is a big problem with Fibomites, and I am no exception. Allodynia is pain that comes from touching the skin. I used to wake up some days and throw all the blankets off coz they just hurt my skin too much. It can happen from clothing too. Soft light fabrics are the key to comfort when you suffer from chronic pain. On days that I am not all dressed up and just sitting around on the couch I wear flannel bloomers and a t-shirt. The bloomers have an elastic waist and elastic around the legs. The elastic moves with me, and is not constrictive which helps my pain levels.

Elastic and shirring
Lolita is a fashion where the clothing is very tailored and well fitted. Some clothes like this can be uncomfortable to people with chronic pain. It becomes difficult to move in fitted, non stretchy garments. I have remedied this in my personal life by wearing clothing with elastic waists or a panel of shirring in the back. This way I don't feel constricted by my clothing and have an easier time getting comfortable. Make sure the elastic is loose enough so that it doesn't cut into you when you move.

Corsets
This section goes against my previous statement. Many people hear corset and think of something so tightly laced that you can't breathe, and would therefor be uncomfortable. I can say though that a properly fitted, custom made corset is one of the most comfortable things I own. While things that move with you can help with comfort, at the same time I find that something restrictive like a corset helps with back pain. It puts a little pressure on aching muscles and helps to support my back much like a knee or ankle brace would do.

Hold on to Hope

I have been thinking about starting a blog like this for a while. I was a bit concerned about how interesting it would be though. The majority of girls that I see in LiveJournal's community EGL seem to be able bodied and mostly pain free, save for a couple. I'd find myself a little envious, seeing photos from meet ups of exploration and the "jump photos". I can't jump. Not any more, But I still stayed hopeful, and thought about this blog a lot. Today I decided to plug my netbook into the modem, as my router is broken, and look at this weeks Lolita Valentines and Lolita Secrets. The Valentines were cute as usual and lifted my spirits. The secrets tend to be snarky or filled with drama, but one really hit home and I want to share it here.

I couldn't have said these words better myself. I know exactly how the poster feels. Everyday is a challenge, and most days I don't even leave the house. On those days I end to sit around in my PJs and try to cope. I do little things like draw or some sewing, but even that on some days is too much for me. Some days I just throw on a t-shirt and jeans if I have to go out, coz I don't have the energy for putting on the frills. I spend the rest of those days depressed and feeling awkward.

So, here I am to share the tips of how I make it through each day, living beautifully. I hope you can take something away from my posts whether you are completely healthy, have the flu, or a chronic pain disorder like I do.

I hope you are feeling well today, and I will see you next time.