I have a lot to say. I have been through a whirlwind of ups and downs (mostly downs) the last month. I have seen some really dark days, and felt really alone at times. But I will hold off on all of that until I have gained some distance and perspective from all of it.
They say that if you're going through hell, to keep going. And that is what I am doing. So, when I finally come out on the other side, I will share what I learned with you while I was on my way.
Until then, I will share with you one of the few things that keeps me going: music.
Sometimes, when my thoughts are too loud I turn on the music to drown out all the other sounds. And it helps. So, today (inspired by another blog post I saw) I wanted to create and share a playlist on songs that I think help describe the physical and emotional aspects of living with Scleroderma. Some of the songs are purposely kind of funny and some are very emotional. If you live with the disease, you'll understand why I chose these songs. If you don't,hopefully you'll begin to better understand how this illness effects our entire bodies, including our minds.
I also found one whole album that aptly describes what many sclero patients endure in one word, and it is surprisingly by my favorite artist of the moment.
So, without further adieu- (Linked to Spotify playlist if you'd like to take a listen)
MY TOP 10 SONGS FOR SCLERODERMA PATIENTS
10. Rehab-Amy Winehouse: Because sometimes sclero patients need to go to physical therapy to rehabilitate their hands, legs, hips etc. And quite frankly, it can suck...so we say "no, no, no."
9. Ice Ice Baby- Vanilla Ice: Well...cause sclero patients are ALWAYS cold.
8. Blue Lips- Regina Spektor: We suffer from Raynaud's Phenomenon...need I say more?
7. Ring of Fire- Johnny Cash: Anyone with sclero probably suffers from acid reflux and GERD. And when food comes up your esophagus with the fury of hell's angels...well..."it burns, burns, burns."
6. Scar Tissue- Red Hot Chili Peppers: What happens in scleroderma is a thickening of skin and other vital organs because of the excess build up of collagen. Collagen is what the body creates when healing a scar.
5. Keep Breathing- Ingrid Michaleson: Many sclero patients deal with lung fibrosis, pleurisy and other lung complications. We also just deal with a lot of BS from our bodies, doctors, nurses, pharmacists, our friends, family and colleagues...so the best thing we can do "is keep breathing..." even if it physically hurts.
4. Disturbia- Rhianna: Because it is a fact that: "Depression is one of the most common complications of chronic illness. It is estimated that up to one-third of individuals with a serious medical condition experience symptoms of depression."
3. Hands- Jewel: For many sclero patients, their hands are the first and most severely affected areas of the body.
2. Tired- Adele: The title says it all. Cause we are ALL "tired of trying...when we don't get nothin' back."
1. My Skin- Natalie Merchant: Again, the title says it all. Sclero meaning hard, derma meaning skin. This is song is beyond sad, but it quite adequately expresses what many feel: Take a look at my body/Look at my hands/There's so much here/That I don't understand..../I'm a slow dying flower/Frost killing hour/ The sweet turning sour/And untouchable
That is my top ten song list (for now). The album that I think sums it all up is.....
Lungs by Florence and the Machine- mainly because of the title, as I said before many sclero patients suffer from lung complications, fibrosis, pulmonary arterial hypertension, pleurisy etc. And also because almost every song on this album is amazing, emotional and speaks to me in some way.
So, what do YOU think of this list? Do you have any you'd like to add that adequately define what it means to live with scleroderma or other chronic illnesses?
Share in the comments below!
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