Time to say something again…but what?

My Headache Guide, showing manipulated photos of me to help the doctors understand my pain. I shared this with Dr.D today and he asked to keep a copy. I'm glad he understood it, and thinks it works. My therapist saw most of it on my other blog, and she loved it, so I decided to print some out.

**I’m sure I should proofread this, and fix many things…but you are getting my stream of consciousness, as it came out, at the wee hours of the morning, when I can’t sleep….if it’s too crazy, just let me know…and I’ll do something with it.

Let’s see, what has been happening since my last post, what do I want to share?  (other than the headache pain scale)

I know!

I had an appointment with my psychiatrist a couple of weeks ago, he feels I need more of an antidepressant.  Given everything that’s going on, he’s concerned the depressive side of my bi-polar disorder will rear its ugly head.  Trouble is, I’ve tried just about everything.  I usually have side effects, or some drugs don’t work with others I have to take, and some just didn’t do much.  So he put me on a brand new antidepressant on the market…Viibryd.  (I think I may have mentioned this.)  I took it for 4-5 days and had the most violent diarrhea ever!  As I told my doc today, “I had to have an ice pack between my cheeks.”  He looked so sad.

This is another doctor I love.  I’ve been seeing him for 8 or 9 years.  Today he looked at me and said, “I think you need to fire me.”  Uh, NO!  I asked what could someone else do that you haven’t done, and you know my history.  I told him, I think all my emotions right now are valid, he agreed.  I said that I believe you really have a problem when you are having in appropriate emotions to things.  He shook his head yes.  I also mentioned that he told me once that I’m so in tuned to my body and my bi-polar illness I can tell immediately if I’m going to have trouble, if I’m the slightest off, and I call on him.  He again, agreed and said no one else he sees will do that.

Then he looked at me, and said, but I care so much for you, I want to take the edge off of some of this pain, and don’t want you to end up in the deep end.  He said, how about a second opinion…I hesitated.  (I’ve really had some horrible experiences with psychs in the past, and am very afraid to go see anyone else.  I’ve known Dr. D for so long, I call him by his first name, I know his wife, I’ve met his child….I was with him when he had to deal with his brother’s suicide.  (they do think it was accidental.  He was very sick and on a lot of medication…and simply took too much.)  But that takes a toll on someone.  And he didn’t have to tell me.  He’s open and honest with me.  (I don’t think he’s like this with everyone, but we’ve been together a LONG time, and have a very special relationship.  He understands with me, that I’m better with a professional psych person if they share some of them with me.  If they trust me with that, then I can trust them.)  I don’t want to see anyone else!

So we compromised.  He got my permission to share my file with another doctor there in his office and ask if they have any suggestions.

(during all of this, I actually had to lie on his couch because I was so dizzy, had a headache, and my ear was roaring….I actually thought it amusing that I actually lied on the psychiatrist couch…how Freudian.

Oh, I did tell him, if we find out I have high pressure he could put me back on Topamax, I might be stupid for a while, but at least I’d lose weight!  He mentioned when I got there that I’d gained weight…I said “that’s not nice.”  He looked taken aback, then I laughed.  yeah I know..but not really, it’s just moving around since I’m so sedentary..losing muscle mass so the scales are so bad, but the look…is not pleasant.  (I looked in the mirror today and thought, “are you really sure you aren’t pregnant?”….oh, I remember you must have sex for that..so guess not!)

Dr. D decided to raise the dose of the Lamictal I’m taking.  It may knock the edge off.

So what do you do when a doctor that you love and trust, says they are stuck with you?

I feel certain we’ll work out something.  But I can’t imagine leaving Dr. D.  When we moved to California for a couple of years and I had to see someone there…Oh My Goodness…that woman was a quack.  She saw people in a group.  Uh, not ok.  And she prescribed Seroquel for me, just took me off of things that were working….Here this is better, it works for both the ups and downs of bi-polar disorder.  Yeah, it made me sleep ALL THE TIME…so no I wasn’t manic or depressed, I was doped out of my brain!  And she didn’t want to take me off of it!  Not cool.  I asked to see someone else in that group..he was better, but not D.

I have much more to talk about.

Like, how I’m not dealing that well with being bed bound!  How my headaches are worse.  How I hate being such a burden.  How I don’t like my marriage like this.  How to keep a caregiver from burning out, or letting you become their everything?

Let me share the name of my new possible diagnosis….This is not definite, but it’s a mouth full….Intercranial Hypertension with Spontaneous Cerbrospinal Fluid Leaks.  Ummm, yeah, what they said.

Still seeing Dr. Gray on the 17th, have asked for something more to help with my headaches for the next 10 days!

Still drawing, and creating something every day.

need to scan some things and put a post on my other blog.  (think you’ll like my NeoPopRealism style self portrait…I think she’s a hoot)

I’m not sleeping well.  Look, it’s 5am! Still haven’t been to sleep.  I have to wait until I’m so exhausted, nothing could keep me from falling asleep, then I can sleep.  Why?  I’m scared to go to sleep.  I’m afraid I’ll wake up feeling even worse.  Or that I’ll die in my sleep.  (this fear started after I had the drainage from my ear recently because of the infection.  I was so afraid it was CSF fluid.)  I’m really hoping this will get better after the next appointment.  Even if they can’t fix everything at once, I just want to feel better….just a little.  I’m not asking for a lot really.  It’s ok, if I never can drive again, or work, or get a foster child, or have a garden…yes I want time, but I can deal without them.  Just let me be able to do something out of bed, and not be in intense pain the whole time, or feeling like I’m going to fall down with every step.

(I actually used my walker in a store the other day, I’ve never used it out of the house before.  (I just used Stuart or the cart to help.) I was proud of myself for using it, but it was difficult, and it’s nearly impossible to back up!  Think I might try to use the store’s little scooter next time…but that will probably make me too dizzy.

So we have a few things to talk about.

I think I’ll talk about caregivers next time.  How they feel, how to help them, and how we as patients feel because we have to use them.  (I’m trying to get Stuart to write a guest post about this, and would love is anyone else would be interested.  If it would help, I could come up with a list of questions.)  Perhaps, this will need to be a series, not just the next post.

 

OK, I’ve stopped my ramble for tonight/this morning.  Feel free to tell me to never post while being this sleep deprived again!

My health and kindness be with you always.

wendy

 

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6 thoughts on “Time to say something again…but what?

  1. Your pain scale photos are a great idea — each one really looks like the number attached. Creative and practical all at once.
    I’m always afraid my doctor will quit her practice or move somewhere inaccessible by public transport. Every time I call to make an appointment, I hold my breath that she’s still “in business.” So, I hope you get your pysch dr. arrangement worked out.
    Good luck with the headaches; hope you get some relief soon.
    Really enjoying your creative blog and your committment to doing something creative every day.

    Like

    • Thank you Phylor for the wonderful compliment on my creative venture. I’m still at it…even if it’s just a little bit that no one else would want to see…I’m at it.
      I need to scan things soon for another post of what I’ve been up to. But haven’t felt like working with the scanner. Think hubby is going to do that for me soon. : )
      I’ve been so surprised at how well the medical personnel I’ve showed it to really like my headache pain scale. I thought they’d scoff, but they have all said, Can I have a copy of this?

      I did at a gallery of past work on my Create to Heal blog, you may like looking at what I used to do.
      thank you again.
      wendy

      Like

  2. Oh Wendy. I am feeling so badly for you right now, my heart is breaking. I know what its like to feel like a burden. I know what its like to be bed ridden. I know what its like to be in pain, to be so sick you can’t even lift your head and so sick that you’d rather just…well you know. I don’t like saying it out loud but I have been there. I can only pray that you will get some relief soon! Is there any chance that you may be able to have some sort of caregiving that isn’t Stuart? I mean a psw, personal support worker, of some sort? Of course that would be an insurance thing but perhaps if you may qualify on some level for this. Even if she could do laundry and cook. I’m just thinking out loud….
    I really hope you feel better soon friend,
    Lots of hugs,
    Deb 🙂

    Like

  3. Deb,
    Thank you so much. It means so much to me to hear someone say…I know what you are going through, I’ve been there.
    (I hate for people to say, I understand, and have no idea!!)

    Hubby is getting some help, We are going to be having house cleaners come in once per month. They will even change the sheets on the bed! And start laundry…but they won’t be here long enough to finish it probably. Hubby does pretty good with that. Good thing we have an oversized front loading washer, he doesn’t have to do many loads that way. : )

    Thank you for all your well wishes!
    I’m feeling the love my friend. and it helps!
    wendy

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  4. Wendy,
    I actually had been wondering if you had IIH and thought about sending you a link a month ago. I have a couple of friends (now including you!) that have it. Here is a link on an article about it from the beloved Teri Robert if you haven’t already read your fill! 🙂 http://www.healthcentral.com/migraine/types-of-headaches-522019-5.html

    I am sorry to hear about what is going on with your Doctor. I can see why it would be so difficult to hear him say I think it is time to fire me. I was actually jealous that you had a doctor say that to you. I know it is really difficult to think about because you trust him so much and feel connected to him. But if his consult does not prove productive, you might ask him for suggestions of a different doctor to try. I had a similar situation with a headache specialist. I felt I would see him the rest of my life. He had hospitalized me six or so times for weeks at a time. He knew me. He was about my husband’s age (8 years older than me) so I figured I’d be set for life. And then came the day when he did not know what else to do with me. I spoke with a well known Migraine advocate and she lit a fire under my butt. I needed to take care of myself. It was so scary to leave the one doctor I had trusted. It was a giant leap outside my comfort zone. See, I had had a miserable/traumatic experience with another neurologist that gave me something similar to PTSD. So, I was *very* wary of new opinions and actually the thought made me panic. But, getting a new opinion changed things dramatically for me. It took several visits, but the migraine/headache specialist I see now and I have a great rapport. He trusts me and visa versa. I feel like we are a brainstorming team. And I took that leap.

    Please know, I’m not trying to tell you what to do and I respect your decisions and support you. I simply want you to know that I get it. I know it is a difficult place to be at. My perspective is just one from the outside, where I care about you and wish/hope that you could get the best treatment possible.

    I also want you to know that I completley feel you when you talk about being bedbound. I am dealing with the same emotions myself. It is a miserable place to be and all I want to do is stuff average people do: laundry, house cleaning (I actually like doing those things). I have said the same thing “I’m not asking for what “average” people do that I REALLY want, like having a family, or being able to drive, or being able to grocery shop or volunteer, I’m just asking to do things around my house. Lately, I have often asked George “Am I being punished?” I know I’m not, but it really feels like it some days!

    Love and hugs dear friend! I hope today you are AWAP (as well as possible).

    Like

  5. Wendy, as long as you keep writing, creating, and posting, I feel a sense of comfort that you are coping. I don’t know how you do it, but I am so happy you do.

    I can relate to the feelings of being bedbound and like a burden you and others here are describing. The desire to just be able to sit up or walk around the house unaided seem like such a simple thing, but during these bad times I know it is not.

    I know you are looking forward to Tuesday. I hope and pray the doctors can nail down the cause of your recurrent symptoms and treat them effectively once and for all. It can happen!!!

    Like

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