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S.O.S. I need help from my Spark friends...

Monday, July 21, 2014

I'm struggling with such high pain since this second trip to the Mayo Clinic. I feel like I'm just enveloped in pain pain pain.
I'm used to sucking it up in my own way and trudging through it. But this pain is like a pool of molasses though, too thick.

One of my dearest Spark friends reminded me that I was not in this alone. That there are many who care about me, and would probably like to know that I'm in a painful place currently. She told me that it is in fact a strength to be willing to ask for help. And that's precisely what I needed to hear.

Because the encouraging words from others; the prayers, the hugs, even those good vibes, are all things that are so valuable right now. My reserves are low, and I am quite weepy lately.

I try to always look for the silver lining. More times than not, I regularly psych myself up to arm wrestle with any negativity that heads my way, threatening me. I try not to wallow or mope.
Have to find something, no matter how small, to be proud of every single day. I'm not doing that currently.

Going through diagnostic tests at the Mayo Clinic is not an easy thing to do. But it is necessary. It is important. It is what I am relying on to formulate my treatment, or even better, a cure. But it is pain-filled, and requires an extra helping of resillience and bravery. I feel tapped out!

I also had surgery this past Wednesday, and that is what is causing me the most pain currently. I was told that this biopsy [called a Sural nerve biopsy], was a fairly simple procedure, and one that the Mayo Clinic does literally every day. I would have a few stitches, some soreness, and heal well.
The surgery ended up being much more involved, and I am still unable to stand or put weight on that foot (5 days later). Being forced to use crutches when your disease already affects your limbs + nursing a biopsy on one hand makes movement more tricky.

I had to take the dressing off of my lower leg 48 hours after surgery, and that visual confirmed why I felt so much pain radiating from my left calf area.
I started counting the stitches. 1, 2, 3, 4... I stopped at 20 or so since my eyes just welled up with more tears.
I was informed this morning by my rheumatologist that special precautions were taken because my disease causes intense swelling in my limbs daily, and they did not want me to rip my stitches (as I had done recently).

My goodness, I'm so sorry to just go on whining about this! I'm really not myself I guess. I meant to just post a brief blog asking for your kind thoughts, good vibes. Perhaps a whispered prayer and well wishes if you wouldn't mind.

I am thankful to be home. I was supposed to still be at the Mayo Clinic this week, but the doctors agreed that I could go home early. I am trying to smile about that. Who wants to spend their 40th birthday at the hospital out-of-state? Oh yeah, tomorrow is my birthday. The big 40. I'm certainly not at the level of health that I had hoped to be at when I turned 40. But here I am nonetheless. I'm sure that's what is adding depth to some of this endless well of tears. Good grief!

It's just that I seem to be forgetting some of the critical positive behavior that had become daily habit to me (with MUCH practice, but still, a habit I tried to nurture). Perhaps because many areas of my mind seem to be overflowing with the pain in my body? Stealing my sleep, stifling my giggles, and rendering me sofa-bound for days now.

Thank you to my Spark friend for nudging me to remember the huge obstacles I have already overcome with this second trip from CA to Minnesota.

I kept my sanity on flights both to and from the Mayo Clinic. These were long and torturous flights for me, but I did it. Air pressure really does a number on a body that already deals with major swelling daily. So yes, there's that.
I made it through another week filled with multiple needle sticks, stitches, surgery (barfy general anesthesia, ugh), sutures, and the naseau side effects of medications.

Unfortunately my trip was also filled with frowns from so many of the doctors I saw, who told me that they wished they could do more. But shoot, they're trying. There are so many sick people who don't ever get a chance to go to the Mayo Clinic for their illnesses, and here I was on my second trip. Yes, I'm thankful for that.

Why does my spirit feel so squashed? I feel like my life is like those last few seconds of Warner Brothers cartoons from so many years ago, closing in until Bugs Bunny is just a tiny little dot. But for me the borders are pain on all sides, closing in.

I'm supposed to say that "I will get through this pain today" out loud, even if I don't completely believe it.
Here goes:
I will get through this pain today!

Am still in dire need of finding my smile. I'm trying, but I need your help!
Thank you for granting me the freedom to share my burden.

'Nuff said.
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Member Comments About This Blog Post
    "Am still in dire need of finding my smile. I'm trying, but I need your help!
    Thank you for granting me the freedom to share my burden. "
    * Always :)

    It was "positive thinking" that killed me on this site.

    The notion as executed, involves a squelching of negative emotions. It disallows success. Makes people feel guilty for expressing frustration. The canned responses wore me down. Don't get me wrong, when things were going well, it was great. When they weren't though, it became like a typical Stepford style church. Instead of "Just trust in the Lord", it's "Don't beat yourself up" and "tomorrow is another day".

    All that to say, I strongly dis-recommend trying to "find your smile" or focusing on the positives at this point. As a friend who cares very much about you, you know how proud I am for what you have gone through and how you have persevered.

    imho you should probably process and grieve the last few years. Come to terms with and be at peace with where you are. That peace probably won't involve happiness, may not even involve contentment. You have suffered some extreme losses that most of us can't really fully and truly understand. Even those of us who have dealt with what appears to be worse have really only dealt with different

    Counter-intuitive as it is to 99.999999% of this site's mentality, the "negative" emotions are probably the healthiest ones you can experience and definitely the ones you need to feel least guilty about.

    emoticon emoticon

    1694 days ago
    My beautiful Bren, you have every right to yell, scream and kick at the world. You didn't ask for this disease with all the pain it gives you. It was trust upon you and it's hard not to ask WHY ME!! As you know I've asked that so many times myself. You know you are always in my prayers and I will keep you there forever. Maybe all these prayers and well wishes will help you in some way. I hope so and I wish you a glorious pain free life. emoticon emoticon We are here for you always!

    1705 days ago
    Happy Birthday. I just read one of your SP friend's blogs about you and your birthday. I am so sorry you are going through this. I went through my cousin's similar journey with her and understand what you are dealing with. Big hug.
    1705 days ago
    We are here for you..all positive thoughts and prayers coming to you from me!!
    1706 days ago
  • GAL7288

    You will get through this! Remember that you are already a strong person as it is, think of it as just an obstacle and that it will be overcome. Stay positive and you will attract positive outcomes. Don't worry about talking about it, it makes you feel better, we are here to offer you support and know that we are cheering you on! I hope you feel better soon ! :)
    1706 days ago
    'Nuff said.

    Okay, I get it. 'Nuff said.

    I'm going to do something that I'm sure the rest of your Sparkbuddies have done.

    I'm giving you permission to HOWL AT THE MOON!!!!!!


    It's alright.

    You have every right to howl. To scream in frustration. To admit that you are saying, "Why me?"

    We've all done it.

    Whether it be pain, sadness, depression, being bullied, stomped on, hurt, angry and even happy. "Why me?"

    I remember reading in one of thousands of books I've read, of a lady asking "Why me?"

    The reply was, "Why not?"

    I don't know if the lessons we learn during life are for a reason. To continue and stretch our souls to the limit that we can endure. To use our experiences in life, to understand or try to understand what others are going through. To admit there are times that we can't understand what another person is going through. To give and receive from others. Whether it be their infectious humour and laughter to pain and unhappiness.

    What I do know, is that there is more than this.

    I get the Bugs Bunny bubble example. I can see it pressing down on you. I just hope that you don't stop pushing back. Push back that bubble and show the darkness it cannot beat you. Take the strength of our well wishes, prayers and positive thoughts and get that light inside you to shine.

    I know you shine.

    Your light is so bright at times...so very bright.

    Know you're not alone. Realize we love you. We're here for you.

    Take care of yourself.

    'Nuff said.
    emoticon emoticon emoticon
    1706 days ago
    You are a brave person to admit so many personal feeling that are consuming your life. On the happy side,
    "Happy Birthday!!' emoticon emoticon
    We all emoticon you.
    1706 days ago
    Oh, my Dear Sweet Friend!
    Please, anytime you need you may vent, unload, talk to me and get it out! I can lend an ear and a shoulder! But, I so do understand as I feel guilty when I even do a status update and say I am down! I, too, try to stay above the negativity and it is a challenge, but we all have times it is overwhelming, hurts to bad or needs said...I need help! We (I) are here...please reach out!
    I know you have things to be grateful for, so do I, but that does not negate when you are in pain (physical or/and emotional)!
    I send you positive thoughts, strong prayers, healing hugs and love!
    1706 days ago
  • MISSB8604
    My girl you have every right to feel the way you and I’m so glad that you decided to come on Spark to share your feelings. You are loved and supported 500%. I am in awe of your strength and your ability to deal with what life throws at you. You are truly wonder woman!
    Thank you for always being such a wonderful friend to me, I can’t tell you how some of your comments have brought me through some pretty dark days.
    We’ll hold you up my dear, don’t you worry.

    1706 days ago
  • DSJB9999
    emoticon emoticon Hang in there my dear Spark friend, love and hugs Donna xxx
    emoticon sharing sun as we seem to have loads!
    emoticon as I love them as they come after the rain and hope we find the gold at the end of it!
    emoticon emoticon emoticon emoticon
    1706 days ago
    emoticon emoticon emoticon
    Chose the clock because I hope that you will feel better soon.
    1706 days ago
    I am so sorry you are going through such a difficult time.
    emoticon emoticon emoticon
    1706 days ago
    Prayers, wishes, positive vibes, big virtual hugs, all sent out your way today, Bren. But I really wish there was more I could do to help you feel even just a bit of relief.
    My thoughts and prayers are with you. I wish they could blend together with all your other sparkfriends' prayers and create a giant healing vibe that would take away pain once and for all...
    Hang in there, my friend.
    1706 days ago
    Dear Dear Bren,
    How good it is that you so generously share with us what you are going through. Listen, your friend is right about strength in asking for help. So many prayers are headed your way.And NOTHING is more powerful than that. How about for now you allow us to send you positive thoughts and vibes and you just sit back and receive them? For now, don't use your strength and energy to dig any deeper to be anything but receptive of love and care from your family, doctors and friends both near and spark. I know what it feels like when I do have pain and it humbles me how freaking wonderful you are in the midst of living with pain.
    You are saint material. In my faith tradition it is an honor to be found worthy of that type of suffering. I only share this as positive encouragement because God knows most of us could never handle it let alone with the grace that you do.
    Happy Birthday. I'm sorry you had to spend it this way but what a blessing your life is to all of us.
    I am so happy to know you and I am going to be praying it up for you sister. Thank you for sending out an S.O.S. It is a privilege to be one of your SparkFriends.
    emoticon emoticon
    1706 days ago
    Hugs emoticon and prayers emoticon
    1706 days ago
    I can't imagine the pain you are suffering right now but myself and your spark family are here for you. We hold you near and dear to our hearts. for you to have the strength to endure this difficult time..A prayer to say with a bunch of emoticon emoticon

    The light of God surrounds us

    The love of God enfolds us

    The power of God protects us

    The presence of God watches over us

    Wherever we are God is!
    1706 days ago
    My heart rests solely with you, wherever you are right at this moment. I can't possibly imagine the depth of what you're enduring, but I hope that even for a few hours each day you manage to find some relief. I hope so badly that the doctors find a way to help you. Sending a great big electronic hug your way.
    1706 days ago
    You are one of the most strongest woman I know. Through everything you exude positivity and for that I look up to you. I can't even fathom what you are going through but you are loved!!!

    I really hope you get relief soon & know that you are the recipient of the most positive vibes possible girl!
    1706 days ago
    We stand with you! If I could, I'd stand for you, instead of you. But I know you won't need me to. You will heal from this surgery, and you will find your positivity (I see glimmers of it already!). Nobody can remain positive all the time. And hey, from today forward you can look back and say, well, at least it's not like the day before my 40th birthday, now that day was Hell. I hope that each day things get better, and that you are able to look back at today as a distant memory.

    You are the strongest person I know, have ever known.

    And for these days when you just don't feel like trying to be positive...well, make this face:

    You will find your laughter and hopefully much much less pain!
    1706 days ago
    well, damn. im so sorry you are going through so much! nobody can be expected to smile and laugh through all of this. I am praying for a medical miracle for you girl!

    please reach out when you need a hug or a laugh. I cant do much but I sure will listen. its exhausting being in pain all the time. I know you keep the faith and I know you stay as positive as you can and you are one tough bird.

    I love you, girlie. Im here anytime. thinking of you often and Happy Birthday. Here is to hoping for a good next year... love ya so! Jan
    1706 days ago
    My dear friend,

    I will be saying daily prayers for you, I hope they help to ease your pain and be better.

    Joy and sorrow are inseparable...together they come, and when one sits alone with you...remember that the other is asleep upon your bed.-- Kahlil Gibran

    All of us are all sending you healing and peaceful vibes.

    1706 days ago

    I have known that kind of pain and I am praying that God will take it away from you! I am so sorry to hear about your struggles. emoticon

    Share as many times as you need to.

    1706 days ago
  • CANNIE50
    Dearest Bren. I feel like your sweet, witty spirit is strong enough to hibernate for awhile, while you truly embrace the grief you have every right to feel. You are lovable when you are angry, you are lovable when you are sad, you are lovable when you are overwhelmed, you are lovable when you feel negative, you are lovable when you cannot find a silver lining. You do not need to smile when tears are the more natural response. Tears release stress hormones and God knows you have far more than your share of stress. I wish I could lift your pain off of you. I wish you could sleep until some of this pain abates. I wish they would find a &$%#$%@ cure! I am upset on your behalf. I am praying you get sweet relief. I am truly sorry you have to endure this, so often, and for so long. I am thinking of you, as always.oxoxoxoxoxoxoxoxox
    1707 days ago
    1707 days ago
    Dearest Bren,

    You definitely are not alone, and I hope this current hell eases sooner than later.

    May your every day be all you need it to be. May an all abiding peace fill your thoughts, rule in your dreams each night, and conquer all your fears. May God manifest himself in ways you have never before experienced. May your joys be fulfilled, your dreams be closer, and your cares be lifted. I pray that faith enters a new height in you, that your territory be enlarged, and that fulfillment and healing are just one step closer.

    MAY GOD ABUNDANTLY BLESS YOU, and those you love, in every way that you require. May he hold you gently in the palm of his hand in a very personal way, and may you rest in the fullness of his love, his grace, his strength, his wisdom, his rescue, his redemption, his healing, his inspiration, his restoration and his mercy as you require it! May you carry in your heart always an extra special awareness of God's great love for you, may you feel his sweet and gentle touch upon your life, and may you see his miracles all around you. I pray in the name of Jesus Christ, our Lord. Amen!

    {{{{{{{{{{ HUGS }}}}}}}}}}}
    1707 days ago
    aww sweetheart that's why we are here. So you can dump all of those feelings and maybe find a bit of release. You shouldn't try to carry all of that all the time. I'm sorry for all that you've been thru and going thru. The body and soul can only take so much, I too would be an emotional wreck and weepy. I wish I could be there to help you along but alas must send the much needed prayers and gentle Hugs to you. You will get thru this pain today and I pray that it eases so much before tomorrow arrives.
    Sending good vibes, a speedy recovery and a pain free time ahead. Hugs and Love,
    emoticon emoticon & emoticon emoticon

    Happy Early Birthday! emoticon emoticon
    1707 days ago
    Sharing is just fine and pain has a way of taking the stuffing out of you....just know we are there for you and it is OK to blog it all away...journaling has long since been a great way to document the journey and let go of both good and bad on the way,,,,this too will pass as they say but it can suck big time while it lasts...Hugs and hope the pain subsides soon...
    1707 days ago
    I'm sorry to hear about this I'm in lot's of pain to crying episodes which I deserve I feel like I'm finished on Earth and it time to go home I'm petty useless and I'm the first one to admit this well hugs
    1707 days ago
    Hope you start feeling better soon! emoticon Hang in there you have many friends pulling for you!
    1707 days ago
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