*Scream*

So when you get sick and doctors can’t give your a 100% confirmed diagnosis people try to help you out by forwarding you articles about people who have been diagnosed with a rare disease that you could have. It’s a very nice thought on their part because they are trying to be helpful and want nothing more to see you happy and healthy again. But I’ve been struggling since Thanksgiving with what to do with medications and honestly have stopped taking everything. Taking pills everyday and not being better gets old.

So today’s mystery disease was Addison’s disease, which is an adrenal insufficiency of the hormone cortisol and often the hormone aldosterone. Fun times. The symptoms are similar – extreme fatigue, excessive phlegm, nagging cough… blah blah blah BUT there is one interesting symptom – your skin darkens as if you have a nice sun tan… I don’t have that (I don’t think.) I can’t tell. I did notice the other day that I still had the tan lines on my butt, which is weird cause I’m not sure they were there a few months ago and I have not had a bathing suit on since Aug! I doubt it though. (Fun Fact – JFK and Eunice Kennedy Shriver had Addison’s)

Anyway, I’m not ready to go back on the doctor tour of testing. It’s pretty much equivalent to diving head first into the pavement.

So right now without meds I’m doing alright. I still take my trazadone at night to sleep because if I don’t sleep well my body cramps up and I have a bad pain day. I’ve stopped the medications that work by keeping increase amounts of serotonin and norepinephrine to calm the over active nerves signals that I have… but it isn’t a cure. It just dulls the pain and to be honest now that I haven’t been taking it, I really think that me learning my own boundaries and resting and not having to work and cook and clean and well basically not living a normal life.

Blah blah blah. I hate talking about this crap but if I don’t release I’ll ball it all up and stress out.

Fall from Grace

I just need to get this all off my chest. I can’t carry it in my soul anymore. If I just scream as loud as I can the weight will be lifted and I will breath again.

Its been a long hard fall from what my life used to be and how great it was to what it has become now that I’m sick. I had a 3 bedroom, 2 bath, beautiful top level condo with hardwood floors, a kitchen I could cook for friends in. A couch to laugh and watch movies on. I had a job that was stressful but fulfilling. I was doing what I had worked my whole life to achieve. Now I can’t work – it will be a year on Wednesday. I’m living at home with my parents (thank God i’m not homeless) and they are a mess. My credit has been destroyed. Everything I strived for has vanished in a blink of an eye. I have friends who don’t think I’m sick – they will say things like “you aren’t always in pain” or “why are you hurting – what did you do?” NOTHING – I am always in fucking pain – I have chronic pain – just because I don’t say anything everyday about where the pain is because I know it gets old doesn’t mean I’m some fucking liar. I don’t ever want to talk about it! I’m so exhausted from it. I know my friends don’t want to hear me complain – so I don’t. And I know that it isn’t my real friends who say things that piss me off but still. I hate defending myself. I don’t ask for help, I don’t complain – I feel like they should go out of their way to support me when I go out of the way to spare them! Is that selfish??? That feels so fair. I try so hard to be a good friend. I know I’m not – I know that I suck at times because my life is so overwhelming but I do try. I just don’t want to end up with no one. I just don’t even know who I am anymore.

Its like every time I catch my breath something goes terribly wrong. I’ve just tried so hard to be positive for the last year and a half but its gets so hard to smile. Wednesday will be my one year anniversary of having to stop doing the only job I ever wanted to do. On top of that I lost my health insurance last week and my Rxs will be $1071 a month. I don’t give a fuck about national healthcare and I don’t want to hear a damn about it. You all (American ALers at least) do not deserve to pay my fucking medical bills. There is no reason that close to $200,000 a year should go to me. If you think that we can pull something dumb like a healthcare bail out you are wrong. I don’t even think the US could bail out PG County, Maryland… anyway – that is a different subject and if you comment about it I am going to block you.

I was so happy a few weeks ago and its just seems like I won’t ever be normal again… I had met a guy ( and I know my happiness shouldn’t come from a man) but it was so nice to feel like I was special. Well it lasted a week (and I don’t normally ever let my guard down) It was so dumb of me – so out of character. I thought everything was different. I thought that this person got me. I don’t even know what happened. He just disappeared. I wish I didn’t care but I’m just so embarrassed. I look like an idiot because I thought this person was different. I just didn’t need to ever have that person come into my life. I didn’t need to let my guard down and get my hopes up. I should have just stayed focus on getting better and instead I hoped and I got fucked.

So in one week, its just seems to be too much. I do feel better now that I got it off my chest.

Fuck you my credit!
Fuck you my old job!
Fuck you (name)!
Fuck you snuggie he gave me ( I will be burning it!)
FUCK YOU chronic pain!
Fuck you PERFECTIONIST personality I have!
FUCK YOU alcoholic!
fuck you stupid disbelievers!
FUCK YOU medication side effects!
Fuck you Rx costs!

I WILL NOT GIVE UP. I WILL FIX THIS. I WILL CLIMB OUT OF THIS HOLE BETTER THAN I WAS! I WILL NOT FAIL BECAUSE I DON’T EVER LOSE.

ahhhhhh damn that felt good. Thank you for your attention 

To my FibroFriends

I am doing much better and I think it’s mostly an anti-anxiety/depression medication (medically know as SSRIs: selective serotonin re-uptake inhibitors.) There are different drugs within this family: lexapro, celexa, wellbutrin, zoloft, prozac and they all do the same thing – more happy juice in the brain because it makes your brain keep extra serotonin floating around. Serotonin is a powerful neurotransmitter that has many many jobs in the brain only one of which is mood enhancing. SSRIs provide extra help in the brain to calm us, make us feel happy, reduce panic/anxiety, and help relieve a little of the pain. The SSRI I LOVE is Lexapro. I used lexapro before for panic attack while in college for 5 years and it really helped me feel like a better version of myself. But last Aug when my fibro start and was HORRIBLE they took me off of lexapro to do lyrica than cymbalta… and so on.  When my panic attacks came back in May I asked the doctors to put me back on it. They said I could combined it was the cymbalta. Well with the lexapro I finally started to feel like more like my old self not fibrocrazy lady. So as an experiment (and not telling my doctors) I stopped taking my cymbalta and figured out that in my opinion it was making me crrrraaaazzzy and more bad mental days made me more stress, depressed, and was causing more PAIN. So for a 2-3 months I just had lexapro and felt more like myself than I had in the past year. After going off the cymbalta I realized it really was helping with pain but honestly, it was making me hear and see things, have moodswings, black out, forget everything… it was antagonizing my fibrofog to the point where I couldn’t function. Thats when I starting researching both Cymbalta and Savella (the new fibro drug):

Cymbalta works with serotonin like lexapro but also works with norepinephrine (basically a natural painkiller with the downside that too much cause effects similar to an adrenaline rush and that makes fibrobodies have more pain.) It is made for people with rheumatological pain like arthritis. But balancing norepinephrine is hard to do especially for someone with fibromyalgia that I 100% believe is caused by false signals in the brain. I believe the cymbalta was causing way more problems while muting/helping with pain. If fibro was just about pain I think I could manage it… its the rest of craziness that overcomes me! =)

Savella is similar to cymbalta but it was created for fibromyalgia pain and they better balanced the selective serotonin and norepinephrine re-uptake inhibitors (SSNRIs – the chemicals that force your brain to leave extra serotonin and norepinephrine floating around) just for our fibrobrains so that it helps with pain but doesn’t make you fibrocrazy.

Now anytime you take medications that work on serotonin (SSRIs) there are side effects. Most of them go away within 3 weeks and are gone for good. Lexapro causes me to not be able to sleep until my body gets really used to it. Some people feel nauseous, some get some headaches but those usually go away within the 1st week. Before I found that lexapro worked best for me I tried 2 other SSRIs which one i don’t remember the name of which gave me lots of side effects and then celexa worked great but they let me try Lexapro when it first came out and it worked better, so it is normal for one med to cause many side effects and another not – they are all tweaked differently because different people respond differentially. The research I’ve done says lexapro seems to cause the least amounts of side effect and for a shorter amount time because the molecules have been split by light to remove unnecessary molecules that seem to cause side effects but i’m parcel because I love lexapro. Hahaha. My friends Sara who’s a nurse loves celexa (which I liked) because it doesn’t make her nauseous.  There are some who still swear wellbutrin is the best. Another is Prozac is one of the oldest so it has more side effects (the newer drugs have been made to reduce side effects and improve function.)

Anyway, my point is even though SSRIs are labeled as “antidepressants” they work for countless other illnesses because serotonin works on much more than just happiness in our bodies. I think it could be a great place for you to start if you are sensitive to medication but need help managing the fibro.

Now SSRIs can be difficult to get on so I highly recommend starting very slow to reduce side effect (medical word for doing this is titrating.) Slower than even the doctor my suggest.  When I started back on Lexapro I did this: for the first week i take 1/4 of the dosage (mornings if it causes sleeplessness/night if it cause nausea.) Week 2: 1/4 in the morning and 1/4 at night (totally 1/2 dosage;) Week 3: 1/2 dosage at one time – your preference for morning or night; Week 4 and on, If I think I need more time for the side effect to get better I stay another week and 1/2 dosage. If you want to slowly step again, I’d take 1/2 dosage when you prefer and 1/4 dosage 12 hours later. If you think your ready to go (a lot of people can just jump from 1/2 to whole in a week or two,) take the full dosage at your preferred time and if you think you need to stretch out each step to 2 week, do it. Its just like drink alcohol – if you drink the whole bottle you’ll be puking and dying! But if you build up your tolerance slowly, you can drink like a champ 🙂

Right now I am taking lexapro 40 mg. I started the Savella last month. I think it was working by muting pain but I ran out of the starter pack and my pharmacy had to order the refill since it’s so new, so I’ve been off it for about a week and hope to pick up the refill today. I’m not sure if it’s working wonders yet since I was on a very slow introduction (just like my lexapro example above), but it isn’t making me worse! I had one week at 50mg and now with this refill I am continuing at 50mg (1/2 the recommended minimal dosage of 100mg) because I am taking it with lexapro (they work together so I may never need a high dosage). I am hoping that combining these two drugs will continue my success with serotonin therapy but give me just the right amount of norepinephrine without all the nasty side effect cymbalta gave me. (and talking with other people on cymbalta – they had the same crazy effects I did! Its a tough medication to be on)

What are you taking? I think if you aren’t happy with what you’re on and it’s been long even to see the true effects of that medication without side effects go off of it for a few weeks and than try lexapro or celexa (or any other SSRI) for a month or 2 to see if you have some of the same results as I do. I really think that the SSRIs are working the best for me by keep me calm enough to handle more stress thus not have a panic or overwhelmed attack. So it prevents further pain and fatigue. I think it also help in quieting pain. An SSRI alone probably wont stop pain completely 😦 but it does help a little. If you do find one you can tolerate, after a few months you may want to add Savella (and by than I will have a better idea of how it works and if it is recommendable.)

Slowly Digging out of This Grave

So today I’m down 15.8lbs!!! YAY! Pools open Saturday – I’m “good enough” for a bikini. It will be very nice to just walk down the street, walk in the lap lane (maybe get in a few slow strokes), and of course get my tan on. I’ve got my 1st pool book already to go: Dead Until Dark. Charlotte Harris’s first book in the HBO True Blood series.  I’m not normally a science fiction reader but with Twilight and True Blood I reconsidered.

So I’ve been a busy bee straighten out my blogs. I’ve never blogged before March 09 and now I have 3, which I hope to earn a little income from with practice!
http://beanskitty.blogspot.com/
http://sexeducationx.wordpress.com/ 

My goal is to post to all 3 at least once a day… but bare with me.

My fibromyalgia has been bad the last few days but a little better today and hopefully a lot better tomorrow.

I have a 2nd date with the guy from Match.com that I went out to dinner with on Sunday night. We had a very nice time – a kiss at the end 🙂 So we’ll see how tomorrow goes!

I just emailed PetConnect, the pet rescue I am getting a dog to foster from. It turned out she needed to be neutered but as long as it went well, she will be here Sat!! As soon as I hear back with a confirmation I’ll post a pic! I’ve never had a dog but think that she will be great therapy. I have to walk her 3x a day and her routine will be more complex than Beans the Cat. I think Beans will freak out the first day or 2 but he enjoyed playing with my ex’s full grown labs so hopefully a small dog about his side will be okay.  I think they’ll become great friends – Beans already loves to play fetch!

Have a great day… I’m off to my weekly doctors appointment.

Rain and rheumatological illnesses don’t mix.

Ever since it starting raining 40 days ago, instead of building an ark, I have been trying to stay as pain-free as possible. Well, it isn’t working score one for fibromyalgia. Pain, fatigue, itchy rashes, hard to swallow food and medicine, trouble moving around, not being able to concentrate, and on & on. I know you all with arthritis, lupus, ms, and such are dying too if you’re in the DC area. April showers bring May flowers, not more rain. 

So I drove across Silver Spring, MD, without crashing into anyone, driving is so dangerous when I’m all fogged out, to see my rheumatologist today. Its time for physical therapy, sweet, this should be fun. I don’t really care about the pain anymore, if I just had pain I think I could deal. Its the whole feel like my mind is turning into mush. Where the therapy for that!? I’m on Adderall for it, even though there is a theory it will make your pain worse, and it is helping a little but not enough to live a normal safe life. 

So before this physical therapy Rx, I had contacted a dog rescue league to foster a small dog because I know that I need to be going to walks everyday to help strengthen my body.  I should be getting a dog this Saturday. The lady who is looking for small dogs for me says she has 3 different dogs and is waiting for their details and pics so I can pick one. This will be exciting and interesting! I’ve never had a dog and I have a big cat, Beans, who still has his claws. Beans has played with Labs before so I think he likes dogs. But thats why I fostered, incase it was a poor situation for either animal. I than can also help to give multiple dogs good adopted homes.

And she wants me to have a plan to return to the workforce the next time we meet in June. I doubt I can do any job in my field full time that will pay the same as the job I had to leave. I worked too hard to have a master’s by age 22 to send my life working part-time at hallmark for minimum wage. Plus, than I would just be living to work. I’d have to spend my evenings and weekends sleeping and relaxing. No, I will never live a life like that. I don’t want to drop dead one day and never enjoy my friends, family, and surroundings. Kiss my ass. I guess this business I’m trying to start needs to take off (check out blogs under the category “It’s All of Your Business.”) 

I know my doctor just has my best interest at heart. She doesn’t want me to become a shut in and honestly I do think I’ve developed a fear of working and failing (again) because of the fibro. I don’t want to try again and have to go through the pain of leaving and feeling that I’m broken and domed to not have a successful career. I’m going to start with volunteering in a life skills program for students who cannot earn a HS diploma because of disabilities, a passion of mine. I had just got my special education certification on top of my k-12 health education certification not to long before having to leave. This way I can still do want I’ve want to do my entire life but get my disability so I don’t have to live with my parents forever and struggle to pay my car payment. 

I’m sure a lot of you out there with chronic illnesses are going through or have gone through this. Feel free to vent on the comments, I feel better after getting this off my chest.

What is Fibromyalgia?

Over the last 2 years I have been experiencing the symptoms of fibromyalgia, culminating in July 2008 with debilitating pain and disorientation. I went onto disability in Dec 2008 because I could not continue my middle school health education job. I still have severe problems almost daily from my fibromyalgia – one of the most complicated cases doctors have seen. 

 

Fibromyalgia Overview via WebMD 

http://www.webmd.com/fibromyalgia/default.htm

Learn more about fibromyalgia with its chronic muscle pain, fatigue, sleep disturbances, and tender points.

Symptoms of fibromyalgia include:

•Chronic muscle pain, muscle spasms or tightness, and leg cramps
•Moderate or severe fatigue and decreased energy
•Insomnia or waking up feeling just as tired as when you went to sleep
•Stiffness upon waking or after staying in one position for too long
•Difficulty remembering, concentrating, and performing simple mental tasks
•Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
•Tension or migraine headaches
•Jaw and facial tenderness
•Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
•Feeling anxious or depressed
•Numbness or tingling in the face, arms, hands, legs, or feet
•Increase in urinary urgency or frequency (irritable bladder)
•Reduced tolerance for exercise and muscle pain after exercise
•A feeling of swelling (without actual swelling) in the hands and feet
•Painful menstrual periods
•Dizziness

 

Fibromyalgia symptoms may intensify depending on the time of day — morning, late afternoon, and evening tend to be the worst times, while 11 a.m. to 3 p.m. tends to be the best time. They may also get worse with fatigue, tension, inactivity, changes in the weather, cold or drafty conditions, overexertion, hormonal fluctuations (such as just before your period or during menopause), stress, depression, or other emotional factors.

If the condition is not diagnosed and treated early, symptoms can go on indefinitely, or they may disappear for months and then recur.

Fibromyalgia Treatments

When it comes to fibromyalgia treatments, there are medications, alternative remedies, and lifestyle habits that may help decrease fibromyalgia pain and improve sleep. Yourfibromyalgia specialist may prescribe pain medication or antidepressants to help end the pain, fatigue, depression, and anxiety. In addition, your doctor may recommend regular physical therapy, moist heat and exercise, relaxation, and stress reduction to help you self-manage your symptoms.

There is no one “pill” that treats or cures fibromyalgia. And a multidisciplinary approach that uses both medication and alternative or lifestyle strategies seems to work best to treat fibromyalgia symptoms.