The thing is, there is no safe place with this disease. Sometimes people are your safe place. And sometimes you just need to feel safe. To not feel alone. To feel the validation that you crave so deeply because of the loneliness and segregation having this disease makes you feel.
If you feel alone and unsafe - what do you seek. Security. Understanding. Support. Empathy. Validation that you are not alone.
When you are the only person that you truly know in the circle of humanity that you surround yourself with, that has a disease that is all encompassing - it IS a lonely place. No matter what - people DON'T know what it feels like to live with this disease. To deal with the changes it causes. The symptoms you feel. The fear that it brings. And that's okay!! Praise God the people I surround myself with don't truly innately have to know. That would mean they are living with this disease. And I wish disease on know one.
But in that "Not Knowing" - is a not understanding -created innocently from being naive' to what it truly feels like. And so of course, people may not remember or realize how lonely and intense certain moments of this disease can be. There is no warning when the fear creeps in and overtakes you. Or the irrational anxiety being alone causes after getting out of the hospital, or fighting the reality of your own mortality - only intensified by symptoms or hospital visits.
People live their lives, get busy, have their own changes and stressors. And in their lives, I think that they/we forget that sometimes giving someone what they need - to feel safe and providing validation (no matter how annoying or silly we may feel it is) IS EVERYTHING. And sometimes - means everything.
We all do it. Live our lives. We are guilty of the "Oh I am so sorry to hear that" when it's happening to someone else, but when it happens to you - It's the end of the world! Right! I mean, it's human nature to be a little selfish and a little self absorbed (unless we're Mother Theresa or the Pope, which we're not) I do it. And if you say you don't, well then....hmmm. We all do to a certain degree.
I think it is that degree that defines us. It is that degree that shows the character of your person.
I don't expect anyone to "Live this disease" with me. I don't. I do try to understand that people are living their own lives, dealing with their own issues, their own caliber of stressor, walking in their own shoes... I don't wish the confusion or the reality this disease causes on anyone - which is why I try (I say TRY ) to be very understanding of other's perspectives. Especially when dealing with my own expectations. Which is a challenge and practice in itself. WOW!
But man - Let me tell you. In complete and utter raw honestly, sometimes you feel so alone and isolated when you are "sick". Especially when you are recently diagnosed. You can be in a room full of people, yet feel so alone it is tangible. It is a scary and disheartening feeling to work through. And as I say, Life is a practice. We make mistakes and we learn from them... and I am still learning. Everyday.
I am learning to voice my needs more and to understand the repercussions of not doing so, the repurcussions of my own neediness (justified or not). But for those of you with loved ones dealing with a chronic, debilitating, disabling, uncurable disease... please remember. Your loved ones are probobly fighting the loneliness disease creates EVERYDAY - even when you are right next to them. So please take a moment to remember, that if they seem needy, reach out or even if they don't..... remind them they are not alone. Validate them. Especially when they ask for it or beg for it with neediness, because the depth of that need is intense. It is real and it is justified.
Again - Like I said before Attitude IS Everything - and I don't live IN my disease... I am just keeping it real and raw and admitting the need that this disease causes......which for me, isn't easy.
Not only am I a self professed control freak - but I'm not used to needing anyone. I was on my own at 16, pregnant with a kid at 17. I did it alone and didn't really NEED anyone to make it.....so this Need thing is new to me. Now I can't make it without needing from someone. I need to feel safe. I need a safe place.
So - when I blog - it is in my rawest form, admitting my fears, my regrets, my needs, my weakness. This IS my Scleroderma. This is my journey. Good, bad or ugly. This is how I feel. This is what is happening to me..... and someone of it isn't as flattering as I wish it was. Especially this. Scleroderma suck and it's lonely.....but it/s not me. But it DOES affect me.
Okay..............there is another craiglister at the door. Dresser be gone. Come on... Do I hear fifty, fifty five - Do I hear sixty? SOLD!! Lets make some money to let the good times roll!
C’EST la vie
- What is Scleroderma? (AKA "The Big S")
- The Spoon Theory
- Early Onset Symptoms
- Got Muscles? Got Weakness?
- Centromere B Antibodies - Scientific Stuff
- GI Involvement in Scleroderma
- Joint Involvement = More Severe disease. Great.......
- Fibro -My-What? Myth or Legend.....This ones for ...
Saturday, April 16, 2011
Okay - So I was down for the count after my Flare up - and I had a few bad days.
So I wouldn't want everyone to think I'm a "Bowl of Cherries" since apparently I'm not.... I'm a bowl of mixed fruit and for a while there it was Cloudy with a Chance of Meatballs.....
I think I was flaring til about March 28th. My finger - Gigantor - decided to return to normal size, my hands decided they no longer wanted to resemble "man hands" and my joints returned to a normal barometric pressure. Sorry I didn't write to update that.
I was caught up in some amazing family events. My sister opened up her very own store. It is called "the Tin Roof" and it is AMAZING! So cute.. and the last few weeks of March were her gear up to the open house, so I was caught up in living vicariously through her and my mom getting things ready.
I was trying to get tickets out there, and just got caught up in the frenzy - So that is the reason for my absence since March 25th. All great news. Along that same front - my husband has been keeping watch on the transfer board to try to transfer closer to my sister and my parents in Louisiana.
After making the difficult and disheartening decision to file bankruptcy and walk from our home, it made us reevaluate what was truly important to us, and the answer was family. And after my last three hospitalizations, it really cemented the thought that we wanted to be close to family. So my husband has been keeping watch and low and behold, in a karmic irony - the week of my sister's grand opening a spot became available for no other than "Shreveport, Louisiana" exactly where my sister lives. What are the chances..... right!! My husband called the Terminal supervisor there and within 15mins they seemed to be BFFs and my husband was invited down.
We took that as a sign and went hootin and hollarin on a road trip to Louisiana, on a whim - that random Thursday the 31st - to check out rentals and for my husband to meet the Terminal Supervisor, shake his hand and see if it was a good fit. Off we went for 18 hours of fun in the car!!
Long story short, my husband went, conquered and got the job. The rental front didn't look too promising though. It is no joke out there in Louisiana. We are talking beach front rental prices, for....well...Louisiana. I mean $1800 a month for a Bow Chicka Wow Wow burnt orange carpet and appliances out of a time warp. Crazy - so we were a little discouraged there, but had furn seeing all the GREEN and WATER - of which we don't see much here in Arizona. The economy and Houseing Market crash has NOT affecting Louisiana!!
We had a great time. I got to see my sister's store which is just delightful and I am SO happy for her. And so very proud of her. She is amazing. We drive home on Sunday the 3rd in a ONE DAY - 18 HOUR car trip (from hell) in which my husband was hell bent on not stopping - so needless to say I came home dehydrated, sore and stiff! lol - But worth it.
We discussed taking the plunge and making the move over the week we got home and decided to Go For it! We are "fixin" to move to Louisiana! Hee Haw!
Sooo my excuse for not updating the blog since we got home (April 3rd) is that I needed to recover (lol) from the 18 hour non-stop express....make the decision to move...and since then it's been non-stop Craigs List posting, Quotes from Movers, Garage Sales, and looking for rentals!
Good Times. No Really Good Times. It's been great! Everything seems to be falling into place. Right Time - Right Place.
Exact transfer Location, Immediate Hire, First Online rental we saw was perfect AND they approved us (no bow chicka wow), It is in the same neighborhood as my parents and around the corner from my sister. Right Home.
The law of Rights seems to be working....
Now I am just lightening the load. Moving is expensive and they charge by weight, so literally selling off the heavy stuff we don't love.
A lot of Craigslist posting and Craigslist Crazies coming by - ha! But we are raising money for the movers and not looking back.
My joints have been a tad angry and I feel really off. I thought it was from the post ride stiffness.. but it is lingering, so maybe my thyroid is off. I dunno - we'll see.
For full disclosure - I have to admit - I haven't been on the treadmill since my flare, but I plan to start again on Monday. Need to get strong to get this packing done!!
Peace and Love to all!!
**Will try to blog at least once a week!
*** Off to see the Wizard (Mayo Clinic) on Tuesday for the POTS and to check in at the Sclero Center. Will post an update about that as well.