Skip to main content

CHRONIC TONIC posts on Thursdays at 7 EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them.  Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist). In addition to our weekly diaries, please join us for ongoing conversations at the Kossacks Networking site.

Also Join Us At Kossacks Networking

Not a member of Kossacks Networking? It's free and easy. Go here to join.

Once your membership is approved, follow this link to join our group.

Already a member? Here is a direct link to today's discussion:
Chronic Tonic: Waiting

Today’s Diary By: Louisiana 1976

Advertisement:  See Thursday Night Health Care Series
The Elephant in the Room: My Meeting With Senator Baucus

For me, one of the hardest parts of having the chronic conditions I have (bipolar disorder, PTSD, arthritis, fibromyalgia, low thyroid, etc.) is the endless round of waiting. Because it's hard for me to wait.

Waiting for doctors' appointments and in their waiting and exam rooms. Waiting for bloodwork and other test results. Waiting for SSI and SSDI to come through. Waiting for myself on bad days to start feeling better either physically or mentally--which can be the hardest wait of all. (The only thing I don't wait for is anything involving insurance--because I'm uninsured and get charity care from the hospital I go to.)

Currently I'm waiting to hear on my latest bloodwork and on the x-ray I had of my lower right leg--which my rheumatologist ordered because she noticed an abnormality there--one I hadn't even been aware of because there has been no pain there or anything. About the bloodwork, it's to check on how my meds are affecting my liver. Because my liver enzymes according to April's bloodwork are up to twice normal. I brought this up with my psychiatrist and he didn't seem overly concerned (unlike my rheumy, who said "havoc" was being wrought with my liver, because my January bloodwork had been normal). My p-doc said the clinic won't change meds until liver enzymes are three or more times what they should be normally. So more waiting and worrying.

Then there's waiting for the sleep lab I've an appointment for around the middle of this month. My rheumy suspects I could have narcolepsy because sometimes I'll zone out when reading, watching a movie or at the computer. Annoying because when I'm reading I'll lose my place and when watching a movie I'll miss a big chunk of it--to come to when the credits are rolling. And sometimes when I'm at the computer I'll come to with my head on the keyboard.

Anyway, isn't it interesting how one who visits a doctor is referred to as a "patient"? Because so much of this activity involves waiting and having to be patient even though one may be suffering and finding it difficult to wait patiently because of that. So I imagine that for most doctors the best patients are the most patient.

Likewise for children--especially those who in this enlightened day and age we describe as having "challenges" such as I had--the best parents are the most patient. I bring this up because my parents, especially my mother, weren't the most patient. My mother was not ignorant of my condition, even though since nobody knew of bipolar in children when I was a child, I had been labeled as "learning disabled" and "hyperactive" so she knew I was not like other children. She still lacked the patience to deal with a child with my differences. Her consequent verbal and emotional abuse made my life hell not only when I was a child but when I was a teen and a young adult.

There were times when I enjoyed taking long walks by myself, and one day in 1979 when I was studying overseas I took such a walk and was raped. I won't go into the rape itself, but others' reaction to it. I got no proper counseling. The head of the small school I had been attending, after hearing what had happened, was no help. In fact, he said I wasn't to be a "burden" on the other students. (Which I wouldn't have been anyway--not wanting to let on what had happpened to the others.) But worst was my mother's reaction when I first called about the attack--she blamed me for it because of my fondness for going off by myself.

To this day I find it easier to forgive my rapist because after all I knew him for only about an hour--and the school's head because he himself belonged to the overtly patriarchal culture of the country in which I'd been studying. Where naturally anyone who'd been raped had to have done something wrong by dressing or walking a certain way, being too friendly, or what-have-you.

But my mother, an intelligent, well-informed liberal American woman in an era when the womens' movement had been teaching people that a woman who's raped is never at fault, should have known better than to blame me because of my fondness for solitude. This was the most unforgivable of all and in my view reflects more on her feelings about me than her views regarding rape.

While this was the most dramatic and traumatic incident, far more common was her use of words in countless mundane situations to shred what little self-esteem I had as a girl and then a young woman who after all was growing up "different" and felt alone because she felt as the odd person out. She let me know that I was an embarrassment to her.

One thing I recall her saying to me as a young adult was something like, "We love you and understand you, but as for the outside world...." And then there was what she said when I was about ten. She'd said that my grandfather--her father--who'd died  before I was born, was a strong believer in the Golden Rule. I said that I'd like to have known her father, to which she replied, "Well, he wouldn't have wanted to know you." As an adult I appreciate the irony  because had she thought about what she said, she'd have realized it's definitely not an example of "doing unto others as you would have them do unto you" but the irony was lost on me as a child. I found it shattering. Being sensitive as I was back then, I grew to doubt myself and to fear others' judging me. I was also lonely except for family back then. And while I can't blame the social anxiety I often felt then and still feel solely on her treatment of me, I will say that her treatment of me was no help.

I won't bore you with any more instances and hope you don't mind the digression into my difficult youth--but while it was hard to write about, at the same time I felt I had to get it out. Because particularly when I'm depressed and feel lonely, the memories come flooding back and I feel as if I have a Cat 5 hurricane raging in my head. I'll add that whether one is a parent of a child who has physical, emotional or mental challenges, or one is in any other situation where one is a caregiver, or merely lives with someone with a chronic illness or condition, patience is the best virtue to have. For if you lack patience and don't treat that person kindly, you contribute to the loneliness that person already feels.

Loneliness--which can be described as another symptom of chronic illness--can also involve a lot of waiting. Everyone's experience of loneliness is different, so this is mine: No one (other than a pet) has lived with me since my father died in 1991. I feel lonely and I've several reasons: I don't get out that much anymore. It's partly due to social anxiety--but another part of it is the way I feel on my "bad" days. Also, another part of it is I'm in the process of appealing for disability and don't think it would look right were I to go running around here and there. I'm sure anyone who asked me about it would think that were I running around here and there, it would be a sign that I'd be able to work outside the home, which I can't.

However I've several ways of dealing with my loneliness. I think that if possible anyone who's lonely should get a pet--because I know firsthand that being owned by a cat makes me feel lonely less often than I otherwise would feel. Lucky's wonderful company--he has a lot of personality and often craves attention. When I come into a room where he is, he'll meow and I can't resist the urge to pet him when he does that. Also, he'll at times jump in my lap when I'm at the computer. I love having him around-- he helps keep me sane. Listening to music and sometimes reading also help with my loneliness.

Usually my online friends and activities help, but I'm very depressed today because of one thing. Last night I read a post on the Chronic Tonic page of Kossacks Networking where someone said she was very lonely and wanted to talk about it and had e-mailed several Chronic members her "cry for help.". But she didn't e-mail me. I feel very badly about this--I wish she'd e-mailed me because I'm in the same boat--lonely myself and even if I don't have any concrete helpful suggestions for her, I can still give her an online {{{hug.}}}.

I'd like to close this on an upbeat note, however. Back to physical matters--currently although I'm waiting on quite a bit, and I feel lonely, for the moment I've some good news for everyone--now that the weather's summery and mainly dry I've been having more "better" days regarding my pain. Because for me the arthritis and fibromyalgia are usually aggravated by cold and/or wet weather and while I'm not perfect during the summer (I don't feel up to long hikes, for example) I often sense a definite improvement in the way I feel. And for that I can be grateful.


20/20 is looking for a volunteer to participiate in a video diary following their experience in tapering off psychotrophic medications for treatment of diagnosis of uni polor or bipolar depression and/or other mental conditions.  This is an outstanding opportunity for us to educate the public about the horrific experiences so may people undergo in discontinuing medication, how uniformed their prescribers, pharmacists and the drug companies are about these difficulties, and how negligent the pharmaceutical industry is in researching discontinuation. If anyone is interested in finding out more about this project, could they contact me.

Upcoming Diarists:

June 11: Diarist needed

June 18: Kitsap River

June 25: Diarist needed

July 2: Diarist needed

Please indicate in comments your interest in being a diarist

Originally posted to Chronic Tonic on Thu Jun 04, 2009 at 03:59 PM PDT.

Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags


More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site