Desperation, Frustration….a little rant

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It’s been a long time since I’ve written.  Life can really get in the way of being able to see ANYTHING!  What does life look like for Katy right now?

  1. Diagnosed with 3 autoimmune diseases.  Able to manage one with diet.  The other 2 are apparently managed with medications, one is prednisone the other hydroxychloriquine.  Prednisone can’t be long-term, causes crazy bruising and causes other health concerns, finished my second course and now it’s out of my system and all symptoms have come back.  Hydroxychloriquine takes months to work, and that’s if it decides to work.
  2. Daily symptoms: extraordinary pain in my feet, burning pins and needles with swelling, swollen painful hands, headaches, low back pain, body shaking uncontrollably from the inside out, insomnia, mood swings, brain fog and confusion, ringing in my ears, fatigue, low blood pressure, dizziness and abdominal pain.
  3. Recently had to move because our landlord decided to sell our house AFTER we signed another 4 year lease agreement.  Have to love the little clauses in a lease.
  4. Husband’s employer decided to reorganize their departments, which left him out of employment, so we lost our health insurance.  We also lost our church, our second home and a lot of our community.  A churches words on stage only run that deep, integrity doesn’t always run deep behind the closed doors of the church.  I haven’t lost my faith in God, but I have in the people who teach it.  Yes they are also human and sin and make mistakes, but actions speak louder than words.
  5. New health insurance is crap and beyond expensive, so I’ve lost my psychologist and psychiatrist, back to a conglomerate healthcare system that has the WORSE mental health department.
  6. Just had the one year anniversary of my brothers tragic death, which is still so fresh I can’t even touch the surface of speaking about it.

I’m done with seeing and experiencing all of this.  Who gets me through it?  God.  I know He has a plan for us and everything we are going through, I know there is a light and I am seeing glimmers of it in the distance.  But-it feels so far away and hard to catch up to.  I want to feel energy again, unity, pain-free, confident and directed.  Instead I feel slow, alone, pained, uncertain and reeling with desperation.

One step at a time, one day at a time, one prayer at a time…it’ll all come back.  Yet my patience runs thin.

Psalm 23: The Lord is my Shepherd, I shall not want.  He makes me lie down in green pastures; He leads me beside quiet waters.  He restores my soul; He guides me in the path of righteousness for His name’s sake. Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me.  You prepare a table before me in the presence of my enemies; You have anointed my head with oil; my cup overflows.  Surely goodness and loving kindness will follow me all the days of my life, and I will dwell in the house of the Lord forever.

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Blogiversary

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I started this blog one year ago in an effort to work through my past and present realities. I’ve grown in knowledge based on putting my feelings and experiences into words. I’ve made some amazing “blogging” friends who have similar experiences in life. I’ve even managed to piss some people off.

My goal was to create a space where I could raise awareness to CPTSD, and it evolved from there. I wish I could be writing more currently, but my health isn’t allowing it. My “brain fog” is a mother fucker at its best. So while I’m not able to put feelings and thoughts into words, I’m still going to do my best to raise awareness.

Thank you to those of you who have been loyal readers, without you…I have no voice.

Autoimmune Disorders Are My New Normal

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For many years I’ve had weird physical issues, swelling and pain in my hands & feet, abnormal fatigue, extremely cold feet at night which then turns into burning feet, rapid heart rate and shortness of breath, painful joints, right leg numb from the knee down and very low blood pressure. All of these symptoms have been sporadic over the past 20 years, never all at the same time.

I finally went and saw my doctor about the swelling and he ran blood tests. The test for Systemic Lupus Erythemous came back positive. So off to the Rheumatologist I went, and he ran more tests but the SLE test was negative this time, but the Sjogrens Syndrome was positive and Celiac Disease also positive.

Since this diagnosis combined with other severe stressors in life I feel like utter shit. All of the above symptoms have hit me at once and I’m not handling it well. Going to see the Rheumatologist again today to further discuss and hopefully start on some medications to help bring this “flare up” down and relieve some symptoms.

In all honesty I’m relieved and scared of these three diagnoses. Relieved to have a name to my bazaar symptoms, no more wondering. Yet horrified because this will be no walk in the park. I always thought my severe fatigue was depression related, which seemed to have been the logical answer. Doctor told me that I may notice a big change for the good with my energy levels as long as the medications do their job. Another reason I’m completely relieved, the possibility of having energy and no more fatigue…how fucking great is that?!

Yet the unknown is really making me panic a bit. There are other symptoms I may start developing and it’s really scary. One being the sun and exposure to it. The sun triggers a terrible rash apparently, I haven’t had that happen yet, but if I am in the sun for more than an hour it destroys my energy. So much so that I have to nap after being outside, the heat plays havoc on my blood pressure and then I’m beat red all over for weeks.

Part of the frustration with this is that SLE and Sjogrens are triggered by stress and emotions. Based on this finding, it’s caused my EMDR therapy to be halted. Can’t delve deep into my traumas for a while, therefore I’m quiet frustrated about all of this.

A few months back I applied for Social Security Disability because of the CPTSD, anxiety, panic, depression and hypervigilant state. I won’t know of the decision from SSI until July. Now if I was to add my new autoimmune diseases to the mix of the claim, it will push back the current application. Such a conundrum.

Praying that SSI approves my claim, praying that the medications do their job and suppress my symptoms, praying I can get back to my therapy and praying for enlightenment for all of this.

What does this mean for my future? What am I to be learning here about all of this? What are my next steps? So many questions and no answers. For an analyst like me…not having answers to see where this is going is brutal!

Thank God for my amazing friends who are available and willing to lend a hand. Gluten free recipes are coming left and right. God blessed me with an amazing support system and that alone makes this current “bump in the road” not seem so destructive on this old truck of a body.

Letter to 30 year old Katy

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Dear Katy;

It’s me, 46-year-old you, and I want you to know something deep from my heart.

During the time of the stalker, not only were you in trauma from him, but your mother was dying as well. You had double the trauma happening to you with no support or advice on how to handle it. This combination is a rare occurrence and you need to be recognized for that.

Every step you took to protect you and your son was spot on. It’s not your fault the stalker became obsessed with you and terrorized you. You had no coping skills except for what you were taught, which was very little. I recognize your pain and desperation for help, how helpless and scared you felt.

As mom was dying, you had the same feelings about that. You felt helpless and scared, you’d never experienced anything like this. It was your first grieving experience with death.

If you’re feeling shame because maybe you’re choices during that time weren’t the best, IT’S OKAY! You have nothing to be ashamed of. I give you full permission to grieve these traumas. I support you in all you did and why did it.

Katy I love you no matter what, I forgive you, I’m proud of you and I’m sorry you had to experience this. I have to forgive us for any shame or guilt you felt during this time. You were a child of God then, but our eyes have now been opened about His love for us. I’m proud of you for doing what you had to do to survive. But you need to see YOU MADE IT! You’re alive today and your mind and choices are at their healthiest. You’re an example of God’s love and grace. Your heart, soul, mind and strength was God working through you. You are now a queen, lover, magi and warrior because of what you’ve been through and you came out shining! I have so much empathy for you, because you didn’t do anything to make this all happen. You were a victim of circumstance and a scared young woman. Although you didn’t receive empathy from your family and your friends walked away from you, please know THAT was NOT your fault. Not everyone can face that ocean of shit and have the strength to move through it. That ocean has been cleaned up and dried up, it’s now clean, refreshing, relaxing and Gods beautiful creation.

This ocean of life can be unforgiving through the storms, but you now know how to navigate through it better. When the storms pass, you come out a bit scathed, but You’re alive! That’s badass!

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You are loved and supported by me no matter what. Katy I’m proud of you and I love you. 💛  Now move forward and keep fighting because I’ve got your back! You’re safe and I will protect you at all costs!

I love you and God Bless you,

Katy at 46 years old