smart

I like being a loner and a hermit. Somehow I have to make that work as my brain cells get fewer and farther between. I am perpetually dazed and confused. On my best days, I pretend that I am fine. On my worst days, I forget how to pretend.

help

I suck at asking for help. It embarasses me to ask for anything whatsoever. It feels like a failure on my part to need that which I cannot get for myself one way or another. I watch other people being helped in all sorts of ways and wonder how they managed that. Some people just exude helplessness. Generally they get lots of offers of help. Other people both ask and demand things. Depending on how well they can manipulate others, they seem to often get what they want. I am not sure how a well balanced person asks for help. They make it seem effortless.

right

I am rarely mistaken for well balanced. I have this overdeveloped sense of black and white, right and wrong. I go through all sorts of contortions to follow what I believe is the right path. Some people don’t…they just go for what they want and need. My usual example here is a woman who has never paid her own rent. First it was because of escaping abuse, then physical problems, then surgery, etc. She owned the newest, fanciest car in the parking lot, which others pay for. After she had been unemployed for months, she got a job and immediately went on a cruise…and got fired from the job. All through this she got tons of free food and rent. She has had the same job for a few months now. I was stunned to see she is driving a brand new sports car. She is often bringing in bags of food from restaurants. She has pretty, new clothes. I feel like such a chump.

iris

Right near the front door of this building is a clump of gorgeous purple iris with variegated leaves. They are at their peak right now. I was sitting in the shade of a nearby tree when the entitled woman came outside in her pink jammies (lease violation). She told me she wanted to pick some iris. At that very moment, the RA came through the door. This woman did not ask to cut the flowers, she gave the RA all the reasons why she should be allowed to…they were going to die anyway, she wanted to put some on a grave, they were her favorite flowers, etc. She wanted “just a few”, which turned out to be at least a dozen. The RA gave her suggestions about where the entitled woman could go to buy some. Then the woman started whining and manipulating. I zoomed off. The conversation made me sick.

I have been ruminating on the whole scene for a couple of days. The entitled woman feels no shame. That must be how she continues to get full food orders and her rent and car paid. It does not bother her to ask…no matter how much she currently has. Hearing NO hardly slows her down. Her convoluted reasoning and incessant manipulation makes people want to say yes just to get rid of her. Her entitlement makes people uncomfortable and unsure of what to say. They are embarrassed for her.

All my life I have struggled with needing help. My parents were unsympathetic. I only started sorting out my challenges once I got to college. Thank goodness healthcare was included free with tuition! I was brought up believing I was a slacker if I wasn’t able to keep up. The more disabled I got, the harder I tried. There were some really scary years. It was seen as a moral failing that I needed food stamps and Medicaid. Then I got disability through Social Security. What a hurdle! I have always been a political hot potato. Politicians like to villainize me. The world is going broke because I am disabled. It’s all a lie. I am not the burden. War and tax breaks for the rich are the burden…but that’s a whole other story.

The bottom line is that I need help. I need money to live on and healthcare to keep me as functional as possible. I don’t like needing the help. I would rather be able to help myself. This creates a never-ending conflict for me. I feel guilty for taking up space and money in this economic system. If it was not for faith in God, what would there be to keep me here? I need to feel that I have purpose and worth.

Role-of-Caregivers

None of this helps me knowing how to ask for help, and when. No matter where I go, most people are accompanied by parents, children, husbands, wives, friends or paid caregivers. I am all alone. As I sit in the waiting rooms of all the places I go to for tests and treatment, it’s hard not to notice that it’s me, myself and I in the room. I have more illnesses than the average patient, yet way less support. What did I do wrong? How come I am so unworthy? I don’t know. I do know that I feel like a sad failure.

I never figured out “the rules”. People stuff confuses me. It’s easier to be a hermit, but sometimes it’s awfully lonely. That’s another reason I like wandering from place to place on wheels. I can get the illusion of closeness by interacting with strangers….and then I can zoom off. I don’t do well with the day to day interactions with the same old people. It’s better that I do not get to know people so much that I lose respect. I would rather believe the best. I am all too easily fooled and sucked in.

I flunk Husbands 101. The two men I married wanted stuff from me, but they did not have any desire to give me unconditional love and support. It was what I could do for them. Since I don’t expect the same back, I guess I didn’t get it. I feel guilty to get what I want. I realize this all stems from how I grew up. I could not trust people to meet my needs. Despite counseling and self-help books and working on it, at 60 years old, I have not figured out the secret to getting what I need or gracefully accepting help.

prayer

For a week now I have been trying to figure out how to complete my SNAP review for the year. Each time I followed their link, all I got was a form that was not interactive. Since I am signed up for paperless review, I knew something was wrong. Each time I tried to figure it out, I felt more hopeless. I knew it had to be dealt with before June. Today I started crying just thinking about trying again. I dreaded even looking. I finally figured it out.

fort

My heart is still beating wrong. I kept waking up last night, struggling to breathe. Feels like a horde of pointy toed critters danced on my chest. Hurts. One of the vertical blinds fell off in my bedroom. I tried to shove it back up into the little thingy that holds it. Instant loud ringing in my ears, SOB, almost fainting and even more heart pounding. Whoa! What a rush. The chest pain is not letting up. I read about heart attacks, but I don’t think it’s that….I think it’s just irregular heartbeats. I wish I felt better. Nice weather today….hate to waste it!

All I have to do is drink water and my heart starts beating hard. What the heck? I think my body is trying to get all the methylprednisolone side effects…..

Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention. From Mayo Clinic.

Check with your doctor immediately if any of the following side effects occur:

More common

  1. Aggression
  2. agitation
  3. anxiety
  4. blurred vision
  5. decrease in the amount of urine
  6. dizziness
  7. fast, slow, pounding, or irregular heartbeat or pulse
  8. headache
  9. irritability
  10. mental depression
  11. mood changes
  12. nervousness
  13. noisy, rattling breathing
  14. numbness or tingling in the arms or legs
  15. pounding in the ears
  16. shortness of breath
  17. swelling of the fingers, hands, feet, or lower legs
  18. trouble thinking, speaking, or walking
  19. troubled breathing at rest
  20. weight gain

Incidence not known

  1. Abdominal cramping and/or burning (severe)
  2. abdominal pain
  3. backache
  4. bloody, black, or tarry stools
  5. cough or hoarseness
  6. darkening of skin
  7. decrease in height
  8. decreased vision
  9. diarrhea
  10. dry mouth
  11. eye pain
  12. eye tearing
  13. facial hair growth in females
  14. fainting
  15. fatigue
  16. fever or chills
  17. flushed, dry skin
  18. fractures
  19. fruit-like breath odor
  20. full or round face, neck, or trunk
  21. heartburn and/or indigestion (severe and continuous)
  22. increased hunger
  23. increased thirst
  24. increased urination
  25. loss of appetite
  26. loss of sexual desire or ability
  27. lower back or side pain
  28. menstrual irregularities
  29. muscle pain or tenderness
  30. muscle wasting or weakness
  31. nausea
  32. pain in back, ribs, arms, or legs
  33. painful or difficult urination
  34. skin rash
  35. sleeplessness
  36. sweating
  37. trouble healing
  38. trouble sleeping
  39. unexplained weight loss
  40. unusual tiredness or weakness
  41. vision changes
  42. vomiting
  43. vomiting of material that looks like coffee grounds

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common

  1. Increased appetite

Incidence not known

  1. Abnormal fat deposits on the face, neck, and trunk
  2. acne
  3. dry scalp
  4. lightening of normal skin color
  5. red face
  6. reddish purple lines on the arms, face, legs, trunk, or groin
  7. swelling of the stomach area
  8. thinning of the scalp hair

Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.

I need to go to the doc’s office/pharmacy on Tuesday. I did not plan ahead when it came to refilling Plaquenil. I forgot today was a holiday. Good thing I had outdated hydroxychloroquine on hand. I looked it up and a new bottle lasts 3 years. I hope I got new ones 3 years ago 🙂

And look at the side effects of Plaquenil…

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have a serious side effect such as:

  • muscle weakness, twitching, or uncontrolled movement;
  • loss of balance or coordination;
  • blurred vision, light sensitivity, seeing halos around lights;
  • pale skin, easy bruising or bleeding;
  • confusion, unusual thoughts or behavior; or
  • seizure (convulsions).

Less serious side effects may include:

  • headache, ringing in your ears, spinning sensation;
  • nausea, vomiting, stomach pain;
  • loss of appetite, weight loss;
  • mood changes, feeling nervous or irritable;
  • skin rash or itching; or
  • hair loss.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects.

Pfffftttt….hard to tell my normal from my weird. Aren’t pharmaceuticals grand?

Advertisements