Living with instead of fighting against…

It’s been a couple of weeks since I posted about the best part of giving up. I thought I would follow with an update on life living with, instead of fighting against, chronic daily migraine and fibromyalgia.

This time last year I had three to four specialist appointments a week. I would see my dental specialist for face pain and my neurologist for yet another medication attempt, and my physical therapist twice a week. I spent most of my days either visiting doctors or recovering from what they did to me.

As of today I have quit all the medications with nasty long term side effects and limited if no positive benefits. I am managing my joint pain with  Joint Comfort tea and Tramadol as needed. I am managing my headache with exercise, ice, and when absolutely necessary a pain killer.

This time last year I barely managed a shower every day. Now I get up, eat breakfast, feed the kids, get to school or at least help them get ready for school if I can’t drive that day. I clean the house and do laundry and make dinner. Delicious dinners too. I walk the dog nearly every day and my goal is every day. Now that I have a Wii Fit Balance Board in the house I work on my core muscle strength, arm strength, and flexibility playing video games for an hour every other day. (So sore!!) I am making it into work once a week with fewer missed days. I am working in my studio one or two days a week and painting for fun and relaxation here and there as well.

Through all of this my headache, joint pain, sore skin, and over sensitive nerve endings are ever present. They try to force themselves to the forefront of my consciousness on a regular basis. When they succeed I take a deep breath, acknowledge their presence, and work on relaxing my muscles and continuing my day. Sometimes they beat me and I have to go lie down and rest. I brew a pot of tea and snuggle my cat and either play a calming game or watch a show. I rest when I need to, I forgive myself when I cancel plans, and I accept that some days I will accomplish a lot and others I will make my cat and dog very happy.

I am in no worse pain than I was last year. I simply have stopped trying to defeat my enemy and am learning to live with it. I have found that simply stopping the medications removed the side effects from my life. Fewer side effects means more spoons. More spoons means a bigger life.

I am beginning to feel as though the darkest times are behind me for now. I can enjoy the burgeoning sunrise and enjoy time with my husband, adventures with my children, quiet morning coffees with my mother and shopping trips with my dad. Somehow, by embracing this disability, I am coming into my own.

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Why giving up is a good thing…

I was having a conversation with a fellow Spoonie the other day and we were expressing our frustration with friends and family that keep telling us not to give up. I should be clear that both she and I have been to all the doctors and have tried all the medications and every treatment that isn’t brain surgery. She has had her headache for 13 years and I have had mine for 3 going on 4. This isn’t life threatening but there is no end in sight.

I don’t believe people are ill intentioned when they urge a chronically ill person to keep fighting but I don’t think they understand why we are better off if we give up.

There comes a time in the daily struggle of someone with an untreatable chronic illness when they are faced with a choice; either they continue to try all the treatments and medications and experimental stuff that has even the tiniest chance of curing them while bringing them untold discomforts in side effects and recovery times or they can acknowledge they aren’t going to find a magical cure and learn to live with their illness.

I have chosen the latter and so has my friend. We have given up and I, for one, haven’t felt this good in a damn long time.

I still hurt every day. I am still ruled by a headache that will be debilitating one day and not so bad the next with little or no consistency. However, I am no longer experiencing a long list of horrible side effects from ineffective medications. I am not going to see three or four specialists multiple times a week to the exclusion of living my life. I am no longer recovering from treatments or spending weeks in the hospital. Since giving up on a cure I have trained to be a silversmith, set up a studio in my basement, become a more attentive and involved mother, and kicked ass getting our house organized. I have begun to keep regular get togethers with friends. I have learned to manage my spoons, take rest days when I need them, and not feel guilty about canceling plans on bad days.

My energy now goes into managing my symptoms. I stopped taking all daily headache medications. I stopped taking all daily fibromyalgia medications. I use mindfulness, tea, and when it’s really bad tramadol to manage my pain. I exercise every day. I sleep as long as I need to. I listen to my body and I try not to judge myself when I have to rest.

I am living a fuller and happier life since I have given up the search for a cure than I have in a long, long time.

Giving up on a cure and the idea that this is all somehow temporary and accepting that I am disabled has freed my spoons up for learning how to live within my capabilities. I am feeling capable now because I am no longer comparing myself to healthy people. I am content carving out a satisfying existence within my limitations.

So, next time someone with a chronic illness is telling you they have given up I encourage you to rein in the urge to tell them to keep fighting. What they are likely telling you is that they are ready to learn how to build a full and happy life now instead of living for the day when they are magically healed.

The Bitching Hour…

There is a time of night I think most Spoonies are familiar with when sleep hasn’t hit yet but all the aches and pains in your body come screaming to the surface because you aren’t in the process of distracting yourself from them because you are trying to sleep.

I call this time “The Bitching Hour”.

It’s an asshole-ish time of day filled with all the hurts but also all the irritating emotions that come with hurting. For instance, right now my joints are aching and my head is pounding. Every keystroke is painful. So do I stop writing this blog post and try again to sleep? No! Because damnit I deserve to write a blog post when I want to! Haven’t I given up enough?!! Do I have to give this up too? What am I going to do if I don’t write? It’s not like I’m going to magically feel well enough to sleep! 

It’s the time of night when my body is bitching about all the things wrong with it and my spirit is bitching about all the things it’s lost because of all the things that are wrong with my body.

Well today I am not going to let The Bitching Hour win. Yes I hurt. Yes sleep is an elusive concept floating somewhere above lake Michigan. However, I don’t have to feel sorry for myself just because things hurt and I’m tired.

My son is sleeping next to me, his warm little body and soft little boy snore emanate a comforting peacefulness that lifts my spirits. My little dog is under the covers at his feet keeping him warm and my cat alternates between being on my lap and next to me on the bed. Well, and demanding kitty treats. I have a fireplace in the corner of my third story room and the bed is covered in quilts made by my lovely mother in law. I am curled up under a quilt she made specifically to help me feel better in precisely these moments and it works. I feel better.

I am starting to get some cards back from the people I sent cards out to, which is a pleasant surprise as I didn’t really send the cards out with the intent of having them answered so much as improving my ability to reach out into the world from within my Spoonie cave.

Eventually sleep will come and I will rest and if I don’t it’s no big deal. I can sleep in tomorrow. When I do sleep in it will be next to the warm and comforting presence of my husband and hero, who will crawl into bed with me when he gets home from work. Nothing too shabby about that prospect at all.

So there Bitching Hour. Go find someone else to torment. My blessings are proving armor enough on this occasion.

 

Damn. Now I have to actually DO something.

You know that moment in the creative process when you have all the tools necessary to succeed and then you realize this means you no longer have reasons for failure? This is the “Oh Shit” moment I arrived at after I settled into bed thrilled at having accomplished the final steps in creating my jewelry shop.

For months since finishing classes my Dad and I have been working on building a studio in a small room in our basement. I cleaned the room out and had two good friends build a jeweler’s bench. Dad began to measure and design a workbench for the rest of my tools. Then we shopped and sawed and hammered and screwed and glued our way slowly to a kind of sort of finished studio. In our way was Christmas, me only being able to use one arm as I damaged the nerve in my right elbow while cleaning out the basement room and have been in and out of a sling ever since, and my dad having some health issues.

Today a good friend came over to help me fill my tanks and test my torch and he stayed to help my dad finish the studio. We all worked many, many, hours and finally, around 7:00 p.m. we finished. I final carriage bolt went through the final bracket mounting the final tool to the workbenches. I swept everything clean and got all my stuff put away. The end result:

Then I brewed a cup of tea and settled in to watch The Beginning of Everything and I realized with a start that I could get up tomorrow and start making jewelry. Suddenly I realized:

do-something

No more reasons not to succeed! It’s time to make something real out of this idea. It feels like writing used to, staring at the blank white page and wondering weather you ever actually knew any words or if you have simply been uttering gibberish for your entire life.

Making dreams reality is scary stuff.

A Week in Trump USA Part 1…

My high school choir Director, a brilliant artist and loving man, posted this on his Facebook page yesterday:

“Those who study authoritarian regimes suggest keeping a list of abnormal events after a demagogue is elected, as a way to remind yourself that this isn’t normal and to keep from being overwhelmed into acceptance by the onslaught of attacks on our rights.
Here is a list below. We are 4 days in. As one author says, “when you see all of this in one list, it is easy to get overwhelmed, at first– it is also easy to see a pattern and to finally, finally recognize that none of this is normal, nor is it ok.”

  • On January 19th, 2017, DT said that he would cut funding for the DOJ’s Violence Against Women programs.
  •  On January 19th, 2017, DT said that he would cut funding for the National Endowment for the Arts.
  • On January 19th, 2017, DT said that he would cut funding for the National Endowment for the Humanities.
  • On January 19th, 2017, DT said that he would cut funding for the Corporation for Public Broadcasting.
  • On January 19th, 2017, DT said that he would cut funding for the Minority Business Development Agency.
  • On January 19th, 2017, DT said that he would cut funding for the Economic Development Administration.
  • On January 19th, 2017, DT said that he would cut funding for the International Trade Administration.
  • On January 19th, 2017, DT said that he would cut funding for the Manufacturing Extension Partnership.
  • On January 19th, 2017, DT said that he would cut funding for the Office of Community Oriented Policing Services.
  • On January 19th, 2017, DT said that he would cut funding for the Legal Services Corporation.
  • On January 19th, 2017, DT said that he would cut funding for the Civil Rights Division of the DOJ.
  • On January 19th, 2017, DT said that he would cut funding for the Environmental and Natural Resources Division of the DOJ.
    * On January 19th, 2017, DT said that he would cut funding for the Overseas Private Investment Corporation.
  • On January 19th, 2017, DT said that he would cut funding for the UN Intergovernmental Panel on Climate Change.
  • On January 19th, 2017, DT said that he would cut funding for the Office of Electricity Deliverability and Energy Reliability.
  • On January 19th, 2017, DT said that he would cut funding for the Office of Energy Efficiency and Renewable Energy.
  • On January 19th, 2017, DT said that he would cut funding for the Office of Fossil Energy.
  • On January 20th, 2017, DT ordered all regulatory powers of all federal agencies frozen.
  • On January 20th, 2017, DT ordered the National Parks Service to stop using social media after RTing factual, side by side photos of the crowds for the 2009 and 2017 inaugurations.
  • On January 20th, 2017, roughly 230 protestors were arrested in DC and face unprecedented felony riot charges. Among them were legal observers, journalists, and medics.
  • On January 20th, 2017, a member of the International Workers of the World was shot in the stomach at an anti-fascist protest in Seattle. He remains in critical condition.
  • On January 21st, 2017, DT brought a group of 40 cheerleaders to a meeting with the CIA to cheer for him during a speech that consisted almost entirely of framing himself as the victim of dishonest press.
  • On January 21st, 2017, White House Press Secretary Sean Spicer held a press conference largely to attack the press for accurately reporting the size of attendance at the inaugural festivities, saying that the inauguration had the largest audience of any in history, “period.”
  • On January 22nd, 2017, White House advisor Kellyann Conway defended Spicer’s lies as “alternative facts” on national television news.
  • On January 22nd, 2017, DT appeared to blow a kiss to director James Comey during a meeting with the FBI, and then opened his arms in a gesture of strange, paternal affection, before hugging him with a pat on the back.
  • On January 23rd, 2017, DT reinstated the global gag order, which defunds international organizations that even mention abortion as a medical option.
  • On January 23rd, 2017, Spicer said that the US will not tolerate China’s expansion onto islands in the South China Sea, essentially threatening war with China.
  • On January 23rd, 2017, DT repeated the lie that 3-5 million people voted “illegally” thus costing him the popular vote.
  • On January 23rd, 2017, it was announced that the man who shot the anti-fascist protester in Seattle was released without charges, despite turning himself in.
  • On January 24th, 2017, Spicer reiterated the lie that 3-5 million people voted “illegally” thus costing DT the popular vote.
  • On January 24th, 2017, DT tweeted a picture from his personal Twitter account of a photo he says depicts the crowd at his inauguration and will hang in the White House press room. The photo is of the 2009 inauguration of 44th President Barack Obama, and is curiously dated January 21st, 2017, the day AFTER the inauguration and the day of the Women’s March, the largest inauguration related protest in history.
  • On January 24th, 2017, the EPA was ordered to stop communicating with the public through social media or the press and to freeze all grants and contracts.
  • On January 24th, 2017, the USDA was ordered to stop communicating with the public through social media or the press and to stop publishing any papers or research. All communication with the press would also have to be authorized and vetted by the White House.
  • On January 24th, 2017, HR7, a bill that would prohibit federal funding not only to abortion service providers, but to any insurance coverage, including Medicaid, that provides abortion coverage, went to the floor of the House for a vote.
  • On January 24th, 2017, Director of the Department of Health and Human Service nominee Tom Price characterized federal guidelines on transgender equality as “absurd.”
  • On January 24th, 2017, DT ordered the resumption of construction on the Dakota Access Pipeline, while the North Dakota state congress considers a bill that would legalize hitting and killing protestors with cars if they are on roadways.
  • On January 24th, 2017, it was discovered that police officers had used confiscated cell phones to search the emails and messages of the 230 demonstrators now facing felony riot charges for protesting on January 20th, including lawyers and journalists whose email accounts contain privileged information of clients and sources.”

Thank you to Mr. Taylor for the information.

In further news, after various government agencies were asked to stop reporting scientific information about the environment numerous alternative twitter feeds for these agencies popped up. I never imagined the National Parks Service would lead the revolution but ladies and gentlemen it certainly has. Follow these alternative feeds for publications about science that the Trump administration cannot stem:

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Finally, are you looking for something to do to improve your mind? How about a little light reading courtesy of the Freedom of Information Act? Take a gander on over to the FOIA.Gov site and read through how to make a FOIA request. Since the Trump Administration has put a gag order into place I suggest we help these agencies out.

FOIA requests can cost some research time and reprinting costs however, you may request a waiver of fees. “Under the FOIA, fee waivers are limited to situations in which a requester can show that the disclosure of the requested information is in the public interest because it is likely to contribute significantly to public understanding of the operations and activities of the government and is not primarily in the commercial interest of the requester.”

I would argue that requesting the release of scientific information gathered by our government on the status of our environmental health during a time when the Executive branch has restricted the release of any information falls quite clearing under the requirements for fee waivers.

 

You have the right to speak up…

I keep trying to keep political posts off my FB feed because I am positive people are sick of being inundated with varying degrees of political ranting. However, I can no more remain silent than I can fly. Today as I write this the news is on in the next room and the reporters are discussing the “investigation” the Trump administration is launching to uncover the 3 million illegal votes that cost Trump the election.

Yes. You read me correctly. Now not only do people stand idly by and let President Trump make up whatever facts his fragile ego requires, they also spend taxpayer dollars investigating those obviously facetious claims.

Trump didn’t lose the popular vote to illegals. He lost it to Americans. Real, living, Americans that aren’t going to be comforted by his claims that our voting was illegal.

I am going to write about what happens going forward. We all have the right to speak up, for  now, in the country. I advise you to use it. With the administration peddling “alternative facts” and rapidly repealing all environmental protections and casting their eyes upon equal rights, please spread the word of what is actually happening. Now is not the time to be silent.

“It begins with us not with politicians … but with us … the ones who need it most. I believe with everything that’s in me that the whole world is begging for healing, even the trees and the earth its self are crying out for it, you can hear it everywhere. Everyone mix it up, it’s not game over yet, it’s just the beginning, but it’s up to you. I’m calling for every [person] to seize the air. Steal it, it belongs to you. Speak out, they can’t stop you. Find your voice and use it. Keep this going. Pick a name, go on air. It’s your life, take charge of it. Do it, try it, try anything. Spill your guts out and say shit and fuck a million times if you want to, but you decide. Fill the air, steal it. Keep the air alive TALK HARD!!!! – “Pump Up The Volume” (c)1990 New Line Cinema

President Trump. We are watching and Midterms are coming.

#themidtermsarecoming

Tea, letters, and other creature comforts…

Is there anything more comforting than a hot cup of tea on a cold snowy night?

Dan and I live on the third floor of the victorian home in capital hill. Our spacious yet cluttered room is filled with all manner of cozy artifices. We have several rugs thrown Arabian Nights style on the floor, our walls are covered in paintings, photographs, and the banner from our wedding. We have piles of pillows all over the place. (Dan claims I have a pillow problem, I assure you that what I have is pillow solutions.) We have a lovely faux-cast iron fireplace that sends warm waves of heat and fire-like flickering into the room. We have a cat and a dog and a collection of beautiful quilts. However, things didn’t become perfect until we added an electric teakettle and a collection of tasty teas.

Suddenly we had a lovely cold-water flat to curl up and spend the wintry days in. As a result I, a vouchsafed gothic novel fanatic, am now obsessed with writing letters in my little flat while drinking a hot cup of tea. So much so that I have discovered drinking enough peppermint tea in a day will actually cause you to sweat tingly peppermint sweat. I have also sent out about 15 letters.

I am finding the creature comforts aforementioned more essential than ever lately. I am scared about the next four years. I have worked so hard my entire life to open rights up to everyone and to save the environment and now, at my most vulnerable time, the country is reverting to old ways.

I don’t want to start a big rant at the moment about politics. If you don’t know why we should take care of people who need help by the time you are reading this blog than I can’t teach you that, nor will my words change your opinion about it. You either have compassion and empathy and the ability to care for others or you believe the world is a small pie and you have to get the biggest slice possible by taking crumbs away from others. So I am not going to start a big argument. I am just going to say I am scared because it seems from my corner that the country was just taken over by a group composed entirely of crumb-grubbers.

So I am marching in protests and writing my elected officials and drinking the hell out of some tea in a room that feels more and more like a good place to hide refugees in the coming years.

Whoops. I guess some additional political commentary slipped in after all. Back to the comforts.

For some reason I think there aren’t enough people writing letters these days. I think it’s important to write in pen and ink because there isn’t a convenient backspace key ready to erase poorly thought out phrases. Think about how different political discourse today would be if people had to think before writing, to insure they meant what they said, and then had to wait 3-5 days before someone could read their writing and reply! There would be so much more thought put into our conversations.

I am trying to bring letter writing back into my life. I think it’s vital to our ability to think to correspond with people. Our social media existence has created such an instant gratification “communication” sphere that I’m pretty sure prohibits any actual communication and I believe we are suffering as a result. I’m hoping by writing people I can redevelop the thought processes utilized in actually contemplating the placement of permanent words onto paper. The actual art of communication.

On this note, yet politically, I have purchased 120 blank postcards so I can send postcards to Congress expressing my political opinion on all matters going forward. I figure I can write “Support HBXXX” or “Oppose SBYYY” on the front and then write a brief set of reasons on the back and send them in. Personalized postcards for political action without much cost or time.

I fear Congress pays about as much attention to phone calls and emails as they do syphilis. I’m hoping the physical nature of postcards will be more attention grabbing. Like face herpes.

(Dan just told me that it’s disturbing that face herpes is a theme of mine. I am afraid I can find no fault with his assertion so I will simply raise my eyebrows and drink some tea instead of responding.)

Where was I….? Right! Postcards to Congress. I loved that so many people came together in the largest single day of protest in U.S. History to combat the hatred pouring out of Washington like snot out of a toddler but let’s face it; unless we do more than march things are not going to change. Hell, even if we do more than march things might not change but we have to try something.

I suggest writing your Congress people, voting in the midterms (FUCKING VOTE IN THE MIDTERMS PEOPLE), and volunteering to spread information and garner support for causes you believe in. Even if you give an hour a month that an hour more than they had before.

We have a choice. We can hide in our cold-water flats drinking our tea and pretending the world outside isn’t there or we can find comfort in our cozy things while we gear up for the long and arduous battle ahead. I admit the former is tempting as hell. This Spoonie is damned tired of fighting to get out of bed everyday much less change the political climate of a country experiencing a mid-life crisis. However, I am afraid if I don’t put forth the effort the country I love will become a place I cannot live. So effort it is.

For right now? Tea, Letters, and the love of a snugly dog.

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