A long one

Another holiday down. I made it through, not scott-free; got off my diet (which incidentally, I can't wait to be back on, although I couldn't help but indulge in one last biscuit!) and felt ill most of the day, which I pushed through. (Usually I need to sit in my recliner after I eat or I feel sick, it's all related to the Dysautonomia, not enough blood volume, blood gets diverted to stomach for digestion, or there's not enough to get there, which either leads to fatigue, possibly cold extremities, and tachycardia, or just plain feeling ill, or problems w/digestion and feeling sick. Worse when off the B.E.D. diet because regular food isn't as easy on the tummy; plus carbs & sugar raise blood sugar causing more ill feelings.)
Of course, couldn't get by without a little family dysfunction either. Suffice it to say I don't do well with being screamed at by someone who should be treating me with love and respect, especially after I've spent a couple hours trying not to get irritated about having to make sure the day revolves around Dad, not around anyone else. Another reason I'm dying to have my own family, just to have something go nicely and not need people who would ruin the fun to feel like I'm part of a family. Holidays and family mean so much more to me now that I've been sick for so long and it's constantly breaking my heart that even that seems to be out of my control. I'm not perfect, but at this point in time, with everything I've been through the last few years, I just can't seem to muster the serenity to not let my buttons be pushed, especially when someone acts selfishly and nonsensically and rubs salt in the wound called "life is NOT fair, and you really don't have control over anything you thought you would, even the closest people to you are never going to be there for you in the way you would like". Expectations. They're killer. Even worse if you're a writer at heart, and you thought in your head that the story had already been written and everything was supposed to happen just SO. Stories are a writer's babies, and we guard them jealously. But I've had to keep letting go of pieces of the story, as it seems The Editor keeps making shocking changes to (in my mind) the most key plotlines! Now, I don't mind a few liberties being taken, but for goodness' sake, don't throw the entire manuscript in the trash! ;)

Speaking of writing...I feel like I'm getting closer to overcoming the panic that inevitably pops up when I think about getting back to my novel. But I still feel pretty unfocused, overwhelmed, and uncentered, too much noise blocking my soul from connecting to the inspiration. But it's getting better. Maybe when I get back from my July tour of friends who will let me crash at their pads I will have managed to let go of some of the emotional pain that I know is the main obstacle. For now it overwhelms me to the point that I know it is impairing my healing, is part of what I need to heal in order to heal. But nothing to do but try the best I can to overcome it without putting pressure on myself.

To distract myself further, and hopefully get to that place more easily, I've decided to take a class. It's not a required course (frivolous, I know, and worse yet when I'm so close to being at the point where I could finally transfer to a University, but I have my reasons)and I've chosen it solely for the purpose of engaging my sometime Fibro-addled brain, and bringing enjoyment, hopefully spurring creativity and boosting my confidence. (Last time I took classes, I practically ended up having a meltdown...I was miserably sick and kept waiting for a good day to do my work, but they were too few and far between, leading to the stress of trying to finish coursework at the last minute, while STILL feeling unwell, and coupled with being extremely worn out from at least a year of struggling to keep a roof over my head and the merciless self-judgement of myself for yet another failure. Abject failure being something I wasn't very familiar with before I became ill...)
SO yes, I will be taking a course, but for fun! And I refuse to worry about how it would look on my transcript if I can't finish it or don't do well...(Partly because the subject matter leaves little room for it!) Yes, a course on Latin American Culture & Literature (taught in Spanish) is as probably as close to Heaven as I can get in a classroom, so we shall see...I don't think even a professor obsessed with symbolism could ruin a course like that, as long as it contains at least some Marquez and Allende.

In other news, I have a doctor's appointment tomorrow, with a certain well-known ID doctor who treats CFS. I haven't managed to see him since I lost my insurance, so I'm nervous both because I'm afraid of the cost, and because I missed my last two appointments and stopped taking one of the medications he had me on. $40 a unit suddenly overwhelmed me...along with the cost of my usual allergy supplements and some supplements I added in an attempt to boost my adrenals and stop feeling so overwhelmed and stressed out for no good reason. (Or perhaps with good reason but that I should have adjusted to long ago.) I'm thinking I may have to find a way to go back on them though, because I've definitely noticed a marked decrease in cognitive function (I found myself having to do this thing where I have to stop and visualize putting ideas or steps in order before I can verbalize them, because I can't seem to organize them enough to do it otherwise and end up tongue-tied. What better form of torture for someone who prides themselves on succintness?) and now that I think of it, my heart has been bothering me more than usual since I discontinued it as well...

Sadly, I doubt this doctor can do anything more for me, but he is probably the most reputable ally I have as far as proving my SSDI case goes. Plus, one of the experimental treatments he put me on has improved my immune system noticeably. It's not helping me get rid of the CFS, I don't think, but it has definitely put an end to getting sick with various infections several times a year, for which I'm very thankful...

So wish me luck...

Mystery Diagnosis Dysautonomia Episode: The Woman Who Kept Falling Down

Talked to my brother tonight, and he told me he saw this episode of Mystery Diagnosis on the Discovery Channel over the weekend, about this lady with neurological disorder, and her symptoms sounded like mine.

(Ironically, I was lying down in my car in a store parking lot at the time, because I've been sick the past week or so, and just running a couple of errands was threatening to set off a POTS flare, was sweating, weak, shaky, and seeing spots, and having slightly funky heart rhythms.)

I learned something new from his telling me about the show, actually. Funny, because just this weekend when it was acting up, I was telling my Dad how I felt like someone had their finger on my carotid artery. My brother started saying how the woman on the show said she "felt like her neck..."and I interrupted him and said "had a finger on her carotid artery!?" And he said

"Yeah!"

I hadn't known that was a common thing until then!

So anyways, that was cool to get to talk with him about that. Now if only I could be as lucky as that lady and find a doctor who will help me get it under control.

Actually, I may have...I went to see an old doctor of mine, a really fabulous man who is a holistic doctor with an M.D.. (The only reason I haven't seen him continually is that I haven't been able to afford long-term treatment with him.)
He thinks the key lies in my adrenals, and I tend to agree...I had another holistic practitioner who helped me at my sickest treat me for that too...So maybe in me that's what triggers it. The adrenal is a very tricky thing, because for some reason most of the medical community doesn't believe in adrenal dysfunction other than complete failure (Addison's Disease.)

He had me do a Saliva Cortisol test, and also ran another Thyroid panel, since my T4 came up low. (It's my understanding that adrenal problems would in turn affect my Thyroid, so...)

I have an phone appointment with him tomorrow afternoon to go over the results, so I'm keeping my fingers crossed we'll have some confirmation of all that, as well as tangible PROOF for the SSA that I am as sick as I say I am. So wish me luck!

Here's the show schedule for the Episode of Mystery Diagnosis. It's on tonight (2am here in the Pacific Time Zone) as well as again on October 3rd. Spread the word!

Discovery Health :: TV Listings :: Mystery Diagnosis

Posted using ShareThis

Sleepydust Video

I guess I'd sent this to my cousin awhile back. The memory of doing it is lost in the fog, but she e-mailed me today, saying she saw it, and had no idea I was going through all that. The greatest thing she said though, was that she loved me.
That says everything. I really think it's impossible for most people (w/o FM/CFS) to understand just what I've been dealing with...Even I have to admit, that I would look at my MySpace & Facebook pictures, my smiling face and all the mischief, and think, well, she can't really by all that sick. What those pictures don't say is how I felt the next day or days, or that some of them are a year old, or that it was months before I went out with my friends and had a day as fun as the ones in those pictures again, that I retreated back into my cave guilty for having used all that energy for fun, or was too busy trying to get from day to day and survive, keep a roof over my head, to risk wearing myself out by going to a get-together or a party.
Or they don't realize at holiday get togethers, just how much it takes to put myself together so well,don't know how exhausting it was to do my hair, they forget about the makeup, don't know I bought my dress on sale for $7 or that my tights have runs, my 4 year old boots had to be carefully polished to hide the scuff marks & wear & tear,or that their tiny heels, worn for just a little while, had me limping the next day, and the inside of my cute purse is falling apart, all because I can't work a normal job, no matter how I long to, but I go through all the trouble because it makes me happy to look pretty every now & then.

So while I can hardly expect people to understand, that just makes me extra grateful when anyone catches a glimpse of it, and says those three words that mean everything, because sometimes it gets even tough to love yourself when you seem to be losing everything, and no matter how you rack your brain you can't find a way to fix it because your body won't allow it, so to know that someone you admire and hold very dear still loves you no matter what, that is a true gift :)

Here's the Sleepydust vid...if I posted it already, oops!

Christmas & Stuff

Well. I made it through Christmas. It was actually the best one I've had in years. Got my wish. Did the Christmas Eve thing, as is traditional in my mostly Latin family. Got to see people dear to me that I hadn't seen in years, mostly because I couldn't afford the gas money, am not big on the phone, and was a little embarassed about the state of my life. (Which yes, is not really my fault, but I struggle a lot with guilt, a little voice inside that insists I must have screwed up somehow, even though I've done everything I possibly could to keep my life from turning into a shambles as I fight for my Disability Insurance.)

It just went to remind me yet again of that phrase I read in a book recently, about how when you can't work, your life becomes about relationships. And yes, many times, I've lain in bed, or sat, depressed, musing about how much more bearable my life would be if I just had more people I was close to in it, if my friends or family members would stop by and visit, even if I couldn't entertain them, if I just had people who cared enough to stop by and keep me company, get me out of my head for a bit.

But I always thought it would be hard for me to have people around when I wasn't feeling well; I'm a bit of a perfectionist, and I like things just so; above all, I like people to think I'm fun, and I always dreamed of the chance to be a great hostess. How can I be fun or a good hostess lying on the couch or in bed?

I got a glimpse of what it would be like on Thanksgiving. I'd spent the morning tidying up, & finishing up my cooking, (trying not to chop my fingers off as my grandmother insisted on talking to me while I did it, and I couldn't think how to politely tell her in Spanish that I have a really hard time multi-tasking these days, lol) and by the time I started getting ready, I was exhausted. By the time my brother and his girlfriend showed up, I could barely breathe, my back hurt so much, and I knew I had to get the heating pad on it, and lie down, quick, before things got out of control.

So I invited them into my room, where I made myself comfortable on the bed & applied the heat, offered them seats, and chatted for a bit. It was actually really nice! Kept me from thinking about the pain so much, and probably, stressing about whether I'd screwed up and tired myself out too much to make it to Thanksgiving.

So then I realized, Hey, maybe I don't have to be buzzing around like a bee offering food & drink and fussing over people, maybe it IS okay to just be. That was a pretty cool realization.

So I didn't care if I was getting tired, my fog was driving me nuts making me feel like I had ADD, it was just nice to be around warm, happy, fun people, and best of all, I think they were really happy to see ME. That was the best gift. I was afraid people would be hurt or upset with me, but no such thing. And when I got asked the dreaded questions about what was new w/me & things like that...well I managed to not blurt out any portion of my whole pathetic sob story, and even though the fog kept me from coming up with anything smart or even tactful to say, it wasn't the end of the world. I didn't even remember to ask what was new with them, but it seemed okay.
(I probably stress more than most people about the little things!)

I was good blues-wise for about 2 days just on the good vibes :)

I know it will help so much if I could just get out more and overcome the isolation I've been helping to perpetrate, but it's so hard sometimes. If it's not you, it's people.

I think that may be Resolution #1 for the New Year. Sounds easy, right? It's not though! I've discussed this in support groups before, and a lot of us have the same problems. You never know how you're going to feel. Things that are totally no sweat for normal people can be a big deal, and you don't want to sound like a baby. (I went out the other night with a friend, and they were walking too fast, and in the cold I was having an even harder time than usual, so I asked them to slow down. No big deal, because they had FM too, but if they hadn't, I would fully have expected to be made fun of.)

The other great Christmas present I got (other than money towards my medical bills!) was that I got the YMCA Scholarship I needed to go work out at their gym. My lower leg muscles feel like they're wasting away! (And the upper ones getting humongous! Not w/muscle though!) So I really need to get on that. Resolution #2...

But that's another post. Hope everyone had a Merry Christmas, and if it was as tough on you as it was for me (which I think it was for many people, even those w/o chronic illnesses) just know that a New Year starts this week and things can get better.

When Someone You Know Has Fibromyalgia

Some Friendly Advice when someone you know has fibromyalgia
----------------------------------------

----------------------------------------
by Lisa Lorden, M.S.

"The hardest thing is not to be able to work magic for a friend." - Maya Patel

Chronic illness presents a variety of challenges to relationships at a time when they are needed the most. Some people with Fibromyalgia (FM) feel an ongoing need to talk about their illness and its impact on their lives. At the same time, many people become more distant or reclusive; this is especially true during periods of severe symptoms, because being around others requires energy that is in such short supply. The mere act of having to pay attention, think and respond to someone causes major stress, headaches and other involuntary reactions for them. It might seem as though this person is pushing you away, when in fact, they really are not able to even carry on a conversation during those times. These alternating needs for distance and closeness can be difficult and confusing.

In addition, a person with FM has experienced enormous losses due to illness. Fibromyalgia often affects every aspect of a person's life, causing a decrease in self-esteem. Once strong and self-confident people may feel inadequate and unlovable due to lack of productivity, inability to work or engage in other activities, discouragement about recovery, financial difficulties caused by the illness, coping with debilitating pain and fatigue on a long-term basis, and so much more. Yet the FM patient is not the only one who is suffering. Watching a friend or loved one struggle with an incurable and poorly understood illness often makes people feel powerless and discouraged. But your friendship does matter, now more than ever; and there are many things you can do:

Educate yourself about Fibromyalgia. Read articles about personal experiences and coping. But don't point out how well someone else may be doing with the illness, and don't try to diagnose or even advise them about treatment.

Be patient and caring.

Understand their need for ongoing rest, and solitude at times.

Acknowledge the seriousness of the illness. Validate feelings of loss, sadness, anger, and hope.

Don't expect them to be able to work or even do basic household chores on a daily basis.

Give them privacy and as much independence as they need.

Offer to help in practical and specific ways; such as grocery shopping, running errands, or household chores.

Understand that looking good or trying to be positive doesn't necessarily mean your loved one feels good!

Make plans flexible to accommodate unpredictable symptoms and fluctuating energy levels. Be understanding when they must be changed or canceled at the last minute.

Realize that your loved one may seem "okay" while you're together but then pay an enormous price later for the over-exertion.

Ask questions about things you don't understand.

Enjoy low-energy activities together.

Express gratitude for what the person with FM still gives to you, even though they may not be able to do some of the things they could before.

Reassure them about how important they are in your life.

When you are not sure about how to be helpful, just ask. But don't pressure them.

Be aware of unpredictable mood swings. Try not to take reactions personally that might seem illogical or over-emotional.

Listen while your friend expresses needs, emotions, and thoughts. But don't try to "fix" them, or control their lives for them.

Express your admiration for your loved one's strength in coping with illness so far.

Learn to be perceptive. You don't have to be a mind-reader, but you can watch for signs of how your loved one is feeling, or when they may need extra help and support, or when they may just need to be alone.

Most important to remember is that just showing that you care means more than you could imagine.
-------------------

References:
"For Those Who Care," CFIDS Association brochure.
"Running On Empty," by Katrina Berne, Ph.D.
"Sick and Tired of Feeling Sick and Tired," by Paul Donoghue & Mary Siegel.