A belated meme

Invisible Illness Week was over a long time ago, and I totally missed it due to not being aware of it at all.

But that’s no reason to miss out on an exciting MEME.

1. The illness I live with is: I have fibromyalgia, along with a rather severe case of Graves’ Disease which has not gone into remission despite medication. I also have a mental illness which has not yet been formally diagnosed by my current psychiatrist, although my record notes major depression with bipolar symptoms, and an adjustment disorder on top of that. Also psoriasis–although this might actually be dyshidrotic eczema, I can’t be bothered to see yet another specialist to confirm this.

2. I was diagnosed with it in the year: 2007 for the psoriasis, although that was done by a GP. 2008 for the Graves’ Disease, 2009 for the fibromyalgia, and I really have no idea about the mental illness as this is the first time I’ve sought out and stuck with treatment for it.

3. But I had symptoms since: 2000 or thereabouts for the mental stuff, and 2006 for the Graves’ Disease. Reading back over journal entries from that time is a bizarre experience because all the symptoms are so clear. The dizzy spells, the inability to walk more than a few metres without dizziness and needing to sit down, the swollen legs and knee problems, the heat intolerance, the total apathy about everything (including my civil partnership, which horrifies me now).

That was also when the unpleasant skin condition kicked in and covered both my hands and feet with tiny weeping vesicles and red, flaky skin. I wore socks all the time to hide my feet, and hid my hands under long sleeves. It did a number on my fingernails, as well. I don’t want to go into the impact that had on my self-confidence and personal life, but let’s just say some things never really recovered.

And February 2009 was when the fibromyalgia first flared up, although at the time I was paranoid about lupus.

4. The biggest adjustment I’ve had to make is: coming to terms with what ‘incurable’ and ‘chronic’ actually mean. I haven’t managed that yet. I’m not ok with having to work part-time. I’m also not okay with the thought of being on medication for life. But I will be okay with this in time. Acceptance is a work-in-progress, I guess.

5. Most people assume: That I’m perfectly healthy. I looked sick back in 2006–the photos from that time are horrific. I’ve put on a lot of weight since then so don’t look quite so much like a bug-eyed corpse.

6. The hardest part about mornings are: Getting out of bed and getting to work. The fibromyalgia causes bad morning stiffness, especially in my hands and ankles, and it takes about 2 hours to ease into my body for the day. Sometimes the train journey to work triggers muscle spasms, headaches, and sensory overload, so by the time I actually limp into work I just want to turn around and go back to bed.

7. My favorite medical TV show is: I don’t actually watch any. I was never particularly hooked on House, and I’ve never seen Grey’s Anatomy. I did used to watch Casualty with my mum, though.

8. A gadget I couldn’t live without is: the wheat-filled heat bags that Raph made for me. The collapsible walking stick that fits in my watermelon bag when I don’t need to use it. Bandages to take the pressure off my joints from time to time.

9. The hardest part about nights are: Getting to sleep. I have a big pink body-length pillow that I curl around, which helps with my knee, ankle and hip problems. My anxiety can be pretty bad in the night as well.

10. Each day I take __ pills & vitamins. (No comments, please) It varies, but I don’t actually take that many pills any more. When I was first diagnosed with GD, I was on nine pills a day (100mg of PTU 3 times a day, and 3 beta-blockers to bring my blood pressure down). Now I’m on 50mg of PTU 3 times a day, and don’t need the beta-blockers any more. I do take 50mg of Pristiq in the mornings (it used to be amitriptyline, but that really isn’t safe for me). I also take Valium and sometimes Seroquel as needed. The Valium is rubbish for anxiety, but it helps with my jaw and facial pain because it’s a mild muscle relaxant. I also take OTC and prescription painkillers as needed, but I save the prescription painkillers for breakthrough pain. Sometimes even 60mg of codeine isn’t quite enough, though. Oh well.

11. Regarding alternative treatments I: should really make an appointment for my hydrotherapy instead of being a lazy cow. I’m not actually on anything for fibro other than painkillers at the moment due to psychiatric difficulties, and I have high hopes for hydrotherapy. However, I don’t really hold with alternative treatments when it comes to certain kinds of mental illnesses. Yoga isn’t going to cure cancer, and I don’t think it can cure non-situational depression, either.

12. If I had to choose between an invisible illness or visible I would choose: something that wasn’t painful, and I would cut off my own foot before I chose a mental illness. That being said, I kind of have issues with the concepts of ‘invisible’ and ‘visible’ illnesses — who’s doing the looking, here? And what are they looking for?

13. Regarding working and career: Things could be better. Mental illness kind of ruined my plans back when I was a teenager, anyway. I was supposed to aim for Cambridge, but I kind of dropped out of everything instead. When I finally got to university, I only scraped through because of the Disability Support Unit–and I kick myself now for not asking for more accommodations. Things would have been very different had I known how to manage my illness back then, but I really, really didn’t have a clue.

14. People would be surprised to know: that I used to think fibromyalgia was just what lazy sods on the internet had. And now I’ve got it and can confirm IT’S TRUE! that I am deeply ashamed of my previous assumptions and am aware that karma is a bitch. Also, when I’m not actively depressed, I am quite a cheerful person. Really. This surprises me as well.

15. The hardest thing to accept about my new reality has been: That I will need medication for the rest of my life and could die if I don’t take it. Not to sound melodramatic or anything, but if you don’t treat Graves’ Disease you run the risk of dying from thyroid storm, or a stroke, or from heart failure. My blood pressure was so high for so long I sometimes worry I’ve done permanent damage to my heart. Also, the whole ‘chronic pain’ thing for fibromyalgia, and the ‘mentally unstable’ thing can be a bit overwhelming. I’ve been reading a lot of disability-related websites and activist blogs, though, and they’ve been incredibly helpful and enlightening. It’s a bit odd, coming to terms with the realisation that you are actually a bit disabled, but in a way it’s almost empowering to accept that identity. Hard, but empowering. I can’t really explain it very well.

16. Something I never thought I could do with my illness that I did was: I have no idea. I have no particular desire to climb Mount Everest, or run a marathon or anything like that. I suppose I have surprised myself by taking a call-centre job. I have phases of severe anxiety about the telephone. And then phases of being the most confident, talkative person in the world ever.

17. The commercials about my illness: I don’t own a TV and I’ve never seen a commercial about illness in any case. I know they have drug commercials in America, though. The thought of someone advertising fibromyalgia seems quite funny. Muscle spasms! Joint aches! Get it whilst it’s painful! Comes with the bonus ability to predict changes in the weather!

18. Something I really miss doing since I was diagnosed is: Pretentious walks with my camera, and gardening. I just haven’t felt well enough (mentally or physically) to do anything for the past few months.

19. It was really hard to have to give up: I gave up smoking in 2007, just before my diagnoses started rolling in, but I did it (in part) because I knew I was sick and had done irreparable damage to my body.

20. A new hobby I have taken up since my diagnosis is: I’m actually getting some audiobooks so I don’t have to hurt my hands holding a book, or hurt my eyes AND hands using the computer to read e-books. I haven’t had anyone read me a story since I broke my forearm as a child, so it should be an interesting experience.

21. If I could have one day of feeling normal again I would: Sort out the garden. Clean the entire house from top to bottom. Have some ~quality time~ with my partner that doesn’t involve painkillers, wincing or having my limbs bandaged (and not in a kinky mummification way, you perverts).

22. My illness has taught me: That the priority seats on trains are actually there for people like me, as I can’t stand up on a rattling train for half an hour without really hurting myself. Also, FWD is a very useful website, and Amanda Palmer is really fucking annoying.

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, I have depression too! But I don’t want to take anti-depressants, so I just snap out of it when I’m sad by thinking positive thoughts/getting regular exercise/doing yoga!”

This pisses me off for two reasons.

The first: fuck you very much for the implication that I’m weaker than you for having to take medication. Thanks for trivialising what I go through. It’s not like I feel like a useless malingering twat who just needs to pull herself together every single day, or anything.

The second: way too many people call themselves depressed when in fact they’re just reacting to unpleasant life events. Sorry, it’s NORMAL to feel dreadful from time to time, especially when faced with life stress like bereavement, job loss, etc. And the fact that you can just ’snap out of it’ like that makes me think that maybe, just MAYBE, your depression is not particularly severe. Your experiences with situational depression are not the same as my experiences with major depression, derealisation, and occasional hallucinations.

I actually get situational depression as well, but that’s a different story.

24. But I love it when people: perform startling acts of niceness. Like the guy in the Post Office who helped me pick up all my parcels, then helped me to my feet & opened the door for me when I was struggling with my stick and general shakiness. Was nice of him not to mug me and kick me in the head.

25. My favorite motto, scripture, quote that gets me through tough times is: “Men must endure their going hence, even as their coming hither / Ripeness is all” – Oh, King Lear. Awesome play of miserable grimness. I LOVE IT. In a Stoic, gritted-teeth kind of way.

26. When someone is diagnosed I’d like to tell them: Incurable doesn’t mean untreatable. Educate yourself. Get a second opinion if you aren’t happy with your doctors. Also, REASONABLE ACCOMMODATIONS. Get HR on your side. Get the Disability Support Services onside if you are at university. Do not fuck things up the way I did.

27. Something that has surprised me about living with an illness is: How amazingly supportive my partner is, and how crucial that kind of support is for anyone ill. I mean, I didn’t expect R to ditch me or anything. But there are a lot of horror stories out there and I’m glad I lucked out in the relationship stakes.

28. The nicest thing someone did for me when I wasn’t feeling well was: My old manager erased several of my sickdays from the register. Completely. So I didn’t lose any sick time, and didn’t lose any pay. She was lovely. One of my other managers drove me home when my back started to spasm so badly I couldn’t walk. That was nice too. I miss that job.

29. I’m involved with Invisible Illness Week because: I just wanted to do a meme, sorry. Invisible Illness week happened in September, so I’m kind of behind the times here. But, MEME.

30. The fact that you read this list makes me feel: doubtful anyone actually got this far, to be honest.

And that took forever to write. I am off to have tea & toast and catch up on Burn Notice and Survivors now.

posted by jeneli.

[Via http://jeneli.wordpress.com]

San Diego Personal Training Business and State of the Economy update

Its been a while since I have blogged, and all for a good reason. Business has picked up for Somagenesis.com Not so much in the sense of pure physical fitness training, but specifically for special populations clientelle with orthopedic, neuromuscular or rehabilitative needs. Afterall this is our niche’ in the San Diego fitness industry. My strong medical background and knowledge of orthopedic and neuromuscular anomalies, enables me to competently help individuals improve their quality of life  through pain amelioration, muscular re-education and gait improvement.   Since January 1 2010 we have acquired 9 new clients to our exisiting portfolio of 36 dedicated clients. I am working with conditions such as Prenatal conditioning, Fibromyalgia, spinal arachnoiditis, Epstein Barr, relapsing remitting Multiple Sclerosis, Post ankle arthroplasty, Post Hip resurfacing, Post total knee replacement, and Post lumbar discectomy.

Moreover, I have noticed that  a select group of San Diego personal trainers are seeing  less clients than there were  two years ago. I have been told than many have dramatically reduced their rates to either keep or acquire clients. Also, I have discussed this situation with several personal training directors working at San Diego’s big box gyms. Memberships are down by 40% and personal training revenues also following suit.  This is unusual for this time of the year!  But given a 10% unemployment figure here in San Diego, this is probably par.

My recommendation for  fellow fitness trainers is to ramp up your marketing, take advantage of your down town and study other facets within the fitness industry and create a niche for yourself.  I believe like the large blue chip companies here in San Diego, only the strong will survive.   Like Qualcomm, who is constantly re creating the wheel, with reserve dollars, you need to do the same!

[Via http://rivak61.wordpress.com]

I Begin.......

Today is an “ok” kind of day. I got the kids off to school, wrote my “Dear John” letter, and chatted on the phone. Sounds fun so far?

I’m hoping my positivity don’t change into negativity. I hope to help someone and hope that someone will help me namely the Rheumatologist. The doctor is good, but my rheumatoid arthritis sucks! Yes, I said it! It sucks! The pain in my wrists, fingers, joints, knees, and ankles hurt like someone is hitting me with a sledgehammer. On top of that I have Fibromyalgia. Yeah, me! All over body pain. Medicine and exercise isn’t working, but I comply anyways. If I don’t move around I will end up paralyzed. I don’t think so. I’m in my early 40’s and have no time for the pain. I wish I could burn it in the fire pit were I burned a few pieces of clothes from an ex-friend. Til’ later I’ll suffer and try not to be so blah, blah, blah.

[Via http://annemyblog.wordpress.com]

Support

Yesterday, I went to my first ever Fibromyalgia Support Group. I had been looking for a group for years and although there were a couple of hospital based groups that sounded okay and I did find 1 support friend through another half-hearted attempt at a group, it is only now that I’ve found a group that has a plethora of active members.

The Upsides:

Everyone in the group knew exactly what I was going through. They understood the sleep issues, the pain issues and finding a doctor issues. It was so much fun being able to talk about medicines, treatment plans and symptoms without someone going “What is that?” or “I have no idea how you feel,” or “Why would you try that medications?”

I noticed that almost half the group relied on walking sticks and about 75% of the group was overweight thanks to their fibromyalgia symptoms OR because of their various medications. Us fat girls all agreed on one thing – we didn’t start out this fat!!! One woman who was diagnosed was an avid cyclist, cycling up to 14 miles per day!

Every women was very accomplished in her own right. Many were working mothers with families to support, or retired working moms. One woman was an ER nurse (formerly), one woman worked in Real Estate (formerly) one in finances (formerly).

Once our conversation really got going, we did a great deal of chatting about remedies, the ridiculous side-effects of Lyrica, why we aren’t always crazy (although we are sometimes depressed).

In general, it felt great to be part of a we.

The Downsides:

Almost everyone was older than me. Although fibromyalgia does affect older women more often (or older women are diagnosed) I know there are young gals like myself out there (under 40 crowd) that also suffer from fibromyalgia. However, there is a benefit to this too, which is that each woman had a number of experiences that I could learn from. But, along with fibromyalgia came other issues that sometimes come with age that I couldn’t quite understand. But what an insight! I realized that it is okay to say yes to walking sticks if I need it and not to be so darned embarrassed. And not to be embarrassed by using those little motorized cars in the grocery stores and even (as one woman recounted) at places like Disneyland. Where I had viewed this for so long as being a weakness – the women using these tools assured me that it makes for a much more enjoyable holiday with family and for a more upbeat shopper than the morose person I usually am in grocery stores.

But because the women were a bit older, I felt hesitant to ask them to exchange phone numbers for those days when I really needed someone to come over to help me out. I have read stories and blogs online of girlfriends with fibro that will care for one anothers kids or household while the other is stuck in bed. I don’t have these crazy days as much anymore thanks to a lot of reframing my state of mind, pain pills (thank you Lord!…and my doctor), and other pain management techniques and medicines, but about once a month I am pretty close to a nervous break down because of my intense pain.

Those are usually the days I call my husband in desperation to come home from work, or just tell him that I really can’t get out of bed.

And, as many of these gals are past the child that needs you at home stage – the meetings are during the day and are often at locations that are not the kid friendliest. So, I’ve got to get on finding that occasional daytime babysitter, bring him with me occasionally, or just have my husband resign to come home for a two-hour lunch (which will eat his vacation time) so I can go for a lunch with these gals once per month.

I imagine that once I get to know them, I will be able to get over my timid nature and ask for a few numbers for those emergency days when I just need a helping hand or an ear to listen.

I encourage anyone with fibromyalgia to seek out a support group – and for us young gals to start talking to our more mature and experienced counterparts. Believe me, it has helped me more than I ever realized! I feel energized, excited and just plain relieved to find people like myself in person. This may just end up replacing my talk therapy.

[Via http://fibrowise.wordpress.com]

Chronic Pain, The Huffington Post, and Comments Elsewhere

gracefulagony posted two interesting links: a HuffingtonPost article written by a doctor experiencing chronic pain for the first time. The doctor used a mix of traditional and non-traditional therapies to deal with his cancer-caused pain. His hypothesis that people in chronic pain are “situational narcissists” caused a stir when posted to a fibromyalgia community live journal site.  I’m curious about the:

I have also used an interesting technology for pain and anxiety management called The New Reality, Personal Achievement Device wich [sic] uses a combination of audio and visual stimulus to relive pain and control anxiety.

mentioned in Dr. Lipsenthal’s article. What exactly is this device? What does it do? 

Any thoughts, reactions, or comments?

[Via http://phylor.wordpress.com]

Child abuse linked to adult pain related disorders

According to the researchers, their study and others have found stress caused by abuse can alter children’s brains, making them more likely to develop chronic pain from such conditions as irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia, interstitial cystitis and arthritis.

“Stressful events in childhood, such as abuse, can alter the body’s stress response permanently and predispose to a wide variety of medical and psychiatric conditions in adulthood,” said the study’s lead researcher, Dr. Gretchen E. Tietjen, professor and chairwoman of neurology and director of the Headache Treatment and Research Program at the University of Toledo Medical Center in Ohio.

It is not uncommon, she said, for people who’ve been abused to have a variety of debilitating conditions, including migraine.

“The linking of these comorbidities may be through abuse-mediated brain changes occurring early in life,” Tietjen said. “Understanding the physiology of abuse’s effects on the brain over the life span may lead to prevention or more effective treatment of migraine and associated conditions.”

She was quick to note, however, that not all abused children develop migraines and not everyone who suffers from migraines or any other chronic painful condition was abused.

But those with a history of abuse “are more likely to have the worst cases of migraine,” she said. “They are the ones most likely to have a lot of the other pain conditions.”

The findings are reported in the January 2010 issue of Headache: The Journal of Head and Face Pain.

For the study, Tietjen’s group collected data on 1,348 people with migraines who were seen at 11 outpatient headache centers. About 58% reported being physically, sexually or emotionally abused or physically or emotionally neglected during childhood. Also, 61% reported having at least one painful condition other than migraine.

Those who had been abused or neglected as children were significantly more likely to suffer from other chronic pain conditions than were people who had not been abused as children, the researchers found.

“Childhood abuse, especially emotional abuse and neglect, is very common in the population of persons seeking help for headache,” Tietjen said. “Childhood abuse is linked to high frequency of headache in adults, and to headache-related disability. Persons with migraine who have been abused are more likely to suffer from depression, anxiety and from chronic stress-related pain conditions.”

The researchers noted that different types of abuse appeared to result in different conditions. For example, physical abuse was linked with arthritis, whereas emotional abuse was associated with irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia and arthritis, Tietjen said.

Physical neglect was linked to an increased likelihood of irritable bowel syndrome, chronic fatigue syndrome, interstitial cystitis and arthritis.

Women who suffered physical abuse or neglect as children were also more likely to have endometriosis and uterine fibroids. Emotional abuse was linked to both conditions as well, but emotional neglect was associated with uterine fibroids alone, the study found.

Dr. Walter Lambert, an associate professor and medical director of the child protection team at the University of Miami Miller School of Medicine, said that “adverse childhood events have significant long-term health risks in adulthood.”

“It does not surprise me that people who reported emotional abuses would have more chronic headaches and migraines,” he added.

Lambert also agreed that stress in childhood can change pathways in the brain, with neglect being the worst. Children can take only so much stress before it begins to affect their growing brain, he explained.

“As human beings,” Lambert said, “we need nurturing — both physical nurturing and emotional nurturing — to flourish.” Society needs to find ways to promote nurturing and stable environments for children to prevent maltreatment, he added.

[Via http://weareallsurvivors.wordpress.com]

Hard to keep going foreward when I'm not getting anywhere

No answers at the doctor today. Just sincere apologies that there isn’t anything he can really do because my insurance doesn’t cover anything and fibromyalgia is still being researched. I explained how I feel this is ruining my life, the headaches, the fatigue, the anxiety the depression. That I’m having trouble working swing shift because I get tired so easily. Plus…switching from AM schedule taking care of Claire..to weekend schedule on swing shift has not bee easy for me lately. I want to quit because I’m so tired and haven’t been getting ANY homework done. Yet, I know we need the money and I have just giving up. I’ve found some other jobs to apply for, but I’m worried that I won’t be able to handle the long hours or a demanding job. What job isn’t demanding?  I feel rather lost and alone, I expected to be better after this last surgery and I was doing ok for a while. Why all of a sudden does this come on? I’ve likely had it for years, but was it the stress I went through living in Eugene? I don’t know what to think and I don’t know what to do.

I beleive I’ve tried it before and it gave me side effects, but I’m going to try and take a low dose of some seizure medication (Nerotin?) that is supposed to work neurologically. I went to a pain specialist about 7 years ago in LA and they put me on it (or at least I think that’s what they gave me)…it gave me severe insomnia. Yet for lack of any better options I will give it a try again. Nothing else is going to be approved and if they can’t find any other conditions then I’m pretty much screwed and left with fibromyalgia.

At first I thought I was ok with another diagnosis, but now I’m not so sure I am. I’m angry. I don’t want to live this way. I want to do the things I want to do, I don’t want “taken care of” and I don’t want to be weak, tired, have headaches and constant pain. Am I getting an option in this matter…no. I’m not a hypochondriac, it’s not a mental disease, I’m not crazy, these things are real and my doctor believes me. Yet, there is nothing to be done.

I’m anxious about how people will view me with another chronic illness that will never go away. I in fact don’t even want to tell anyone. Yes, I’m sort of announcing it to the world on my blog, but hey…no one reads this.

It’s really hard to keep going right now.

[Via http://moderatelyinconclusive.wordpress.com]

Blood test results

My ESR is high and my platelets are elevated. So there’s definitely some inflammation present, even though my rheumatoid factor was normal. My CRP is also within normal range (although higher than it was last time, not sure if that means anything though). I’m surprised at the amount of relief I feel–it’s sort of validating, in a way. It means that this isn’t all in my head.

The doctor agrees that the swelling in my fingers, knuckles, ankles and lower back is most likely synovitis. Although my fingers feel all sausagey, my ankle joints are the worst–it’s not just a fluid build up there, the soft tissue is also inflamed and boggy. She was quite surprised when I told her that the rheumatologist had never actually explained what was going on with the swelling. The joint pain with the associated swelling was the primary reason I ended up at the rheumatologist’s last year, only to come away with a fibromyalgia diagnosis when all my blood tests came back normal.

Now I wonder whether he wrote me off too quickly–I mean, I DO believe I have fibro, but the symptoms specifically associated with FMS were never my primary concern. I don’t just have the ‘vague aches and pains’ the rheumatologist seems to think are my main concern–the FMS problems are on top of everything else, if that makes sense. My pain is very joint-specific, and I never really got a definite answer as to why that was the case. So I’m taking my partner with me when I go back to the rheumatologist’s next week. She’s better at describing my symptoms than I am because I’m very forgetful and tend to minimise things when I’m actually dealing with doctors.

Aaand in other news, my GP has set up my Team Care Arrangement, so I just need to make an appointment for hydrotherapy now. Lovely warm water, and nice helpful physiotherapists who are used to dealing with chronic illnesses.

posted by jeneli.

[Via http://jeneli.wordpress.com]