Day 27 of the WEGO Health Blog Writing Challenge: 5 Challenges – 5 Things that Keep Me Going

Posted: April 27, 2012 in about me, Coping, Medical Conditions, Pain, symptoms and diagnostics
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Great assignment for today  – list 5 most difficult parts of your health focus, and another top 5 list for the little, good things (small victories) that keep you going.

So much has happened in my life the past month – this is a fun one for me:

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THE DIFFICULTIES:

1.  Finding a Pain Management Clinic that has doctors that are up to date on the best new treatments for chronic pain issued (RARELY do I find a pain management doctor that knows more about the latest and greatest than I do – because I suffer from chronic pain, I have a personal investment in my research. I get sick to my stomach when I go to see a new doctor, and I start to talk to him about the surgery I had in 2011, and s/he has NEVER even heard of the procedure – which has been around over 20 YEARS. SCARY. Do I want this person treating me with archaic knowledge. No.

2. Being reliant on medications that I must rely upon to get through the day, every day. Even though the percentages of people in developed countries in the world on daily meds are quite high (over 50%), it seems that people like to pretend they live in ivory towers and are better than everyone else and look down upon people that take medications – no matter what they are.These people tend to be in control of the lives of others: bosses, managers, etc. That makes it hard for people like me to get back to work – when we need accommodations to get to doc appts, or we need to adjust our hours due to our conditions. The ADA is there, but it is really not as helpful as it is made out to be. That will be the subject of another post. Just because we take a medication or we have a health issue does not make us less valuable as an employee or person.

3. Getting people to read my blog. During this challenge – I expected a huge response from my 150+ Facebook and Linked-In and Twitter friends. I have heard from THREE. Yup, 3. What do I have to do to get people to read my stuff and wake people up to the reality of poor health care by our PCPs, and even our experts? An article in the latest issue of Newsweek (April 23-30, 2012 issue) could have been written by ME – it opened with the story of a 38-yr old man whose PCP ignored his constant complaints of symptoms. The man researched his own condition on the internet and learned he had kidney cancer. He was dead 3 months later. (I will be writing a review of this article in a later blog.) How can I get this message out – things MUST change! Billboards? Planes with banners? The Goodyear Blimp?

4. Finding friends that are tolerant of my tenuous scheduling issues. Due to my multiple conditions, I do not know from one day to the next how I will feel, if I will be able to drive, if I will even be able to focus properly. Usually I can come around in 2-4 hours after I wake up – but that required people with flexibility. I have ONE friend right now that “gets” me and is still my friend. The rest, sad to say, have all drifted away, and some have posted snide comments on my FB pages about my issues “What now?” “Gross.” Some just don’t post anymore -even family. They are on FB  – I see them on chat – I see them comment on other’s posts – but all of mine are ignored. It hurts. And then, my doc gets after me for not being socially involved. Gee – how can I be when no one has the patience – or cares enough – to be my friend.

5. Not being a “productive member of society” when I used to work 60 hours/week, go to the gym 5 days/week, personal-train a few folks on the side every week (I was a personal trainer in weightlifting for many years) and have a social life on top of that. Now, A good day for me is getting up, emptying the dishwasher OR taking out the garbage OR doing laundry. I feel very useless. I feel like an “in-valid” on Gattaca.

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THE THINGS THAT KEEP ME GOING (that keep me from giving up):

1. My husband, Kurt, and his belief that I do have value, even in my current state.

2. Sharing my life with my parrots, watching with awe as they communicate with me and Kurt, as their personalities develop, knowing they will be with me for the rest of my life. I am so thankful to the Universe, to Spirit, to God, for giving me the opportunity to share my life with such amazingly intricate and specialized sentient beings.

3. Finding my new counselor, energy psychologist Fern Ross Israel, who has helped me more in the short time I have been seeing her, than ALL of the counselors I have seen since I was 16 yrs old. IT was serindipitous how I found her – so I knew she was the right person for me to see. The Universe has truly gifted you, Fern.

4. Ben & Jerry’s Limited Edition flavor available at Target ONLY – Brownie Chew Gooder. Hands-down, the most PERFECT ice cream flavor ever to come in one carton. Even when I don’t feel well  – it is the only thing that I can eat.  God Bless you, Ben & Jerry!

5. Polymer Clay. This versatile medium has enabled me to express myself in a variety of ways. Too bad the psycho-mommies of the world think that everything was created for their kids – and they forced the companies to change the formula. This WAS a serious art material, not a kids toy. There were kid’s clays already. Now, I have to spend 5x what I would have had to spend 3 years ago to get a quality art product. Bitter am I at these mommies – yes. But, I have stockpiled enough product via free Amazon certificates I earn through the completion surveys online. And this makes me blissful.

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Comments
  1. crshore says:

    I’ll be following your blog religiously! We have so much in
    common in terms of previously being very type-A and active
    to….this “fun” stuff.

    • Lori says:

      Thank you so much! It’s SO nice to hear from you. I’ve been pretty down about things lately as my sx have been leaning towards the VERY low end of BP. Today I had a reading of 60/35. Yikes. It’s really lonely having this disorder and having to deal with docs that think they know everything when they really don’t. I read your post about your phone consult with the doc in NY. I actually emailed her already to ask about the cost of a consult. SO – big thanks for posting about her – I had never come across her name in my research!

    • Lori says:

      Awesome – i’m following your blog now as well!!

  2. Lexie says:

    I don’t know why the universe is like this for either of us. I too used to have friends and a fairly active social life but now getting thru each day is a major accomplishment. I feel your pain and I have no answers. I love my parrot, my raccoon, my pet dogs and my service dogs and have a few online friends but that’s about it. On the bright side God gives us a REAL appreciation of His work that most people do not notice or enjoy.

    God bless you!
    Lexie

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