Friday, May 17, 2013

In Everything I Do...

The last few days have been very difficult for me.  Physically and emotionally - I am just so tired.

Every so often I have a flare up of my Rheumatoid Arthritis combined with Fibromyalgia.  That's what happened to me on Wednesday.  I woke up and, after hoisting myself out of bed, really debated keeping Brian home from school.  I wasn't sure I'd be able to get him dressed - let alone have the energy to drive him in.  When these two things happen at once (which, thankfully, is not often!) it's pretty debilitating.  My fingers are swollen three times their size... every joint aches terribly... my muscles throughout my entire body feel like someone is squeezing them tightly... my skin feels sunburned... I can barely think straight... and I'm so, so tired.  The mornings are always the worst until about noon when my joints calm down.  It really sucks!  And when you're already feeling pretty depressed - having these kinds of physical issues make it seem so much worse.

I did get Brian to school that morning and spent a long day trying to keep up with his energy.  From my perspective only - having to handle my grief, an unexpected pregnancy and all the fears that come with that, Brian's grief and his day to day needs and high energy, Ed's grief and my physical issues that crop up... it is not a picnic.  I have been through a lot in my lifetime, but Gavin's death is by far the biggest challenge of all.  I keep repeating my own private mantra to get me through my days...

"Honor Gavin in all you do.  Honor Gavin in all  you do.  Honor Gavin in all you do.  Honor Gavin in all you do."

My ultimate goal is to not let myself or my family be destroyed by this tragedy.  I want every choice I make to honor Gavin's life - his death - his legacy.  The way I handle myself.  The way I parent his little brother who meant so very much to him.
The way I treat his Father who he loved so dearly.
Keeping that in my mind - and my heart - is helping me get through this.

But it's hard.

My focus is on my home.  On Brian... and Ed.  I don't really answer the phone or even the door.  I'm trying to keep up with responding to emails, but I likely won't reach the middle - let alone the summit - of that mountain.  My Mom and my sister, Bean, came over Thursday night to help me start on thank you notes, for which I was very grateful!  Please know that I (hopefully) won't forget you.  It is a daunting task - for more reasons than you think.  But it is very important to me to acknowledge everyone who has gone out of their way to do nice things for us.  It may take me a while... but I'll get there.

One more complaint and then I swear I'm done.  The really bad thing about having Rheumatoid Arthritis - and Fibromyalgia - especially when you have them at the same time - is that you are so, so tired.  But the logical solution of going to bed is, for me, the worst thing I could do.  Staying in one place too long means you stiffen up and it just makes it that much harder when you get up.  Booooo!!!

I'm done complaining.

I'm tired.

I'm a lot of things.

But mostly, I'm broken hearted.  And that colors everything these days.
I will continue to honor Gavin in everything I do.

26 comments:

  1. Eloquently spoken, Kate. We are continuing to lift your family up to the One who can bring you peace in this tradegy and healing to your body.

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  2. You do honor him Kate, with your honesty and your willingness to share him and your journey with us.

    Love you.

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  3. Oh Kate, you have a lot on your plate right now. Words are such a puny response to your pain, but I continue to remember you each day, to pray for you and to bless you with my thoughts. I'm sorry they can't heal you but just know that you are not alone, ever. You are honoring Gavin every day and touching me. Your words have power as does your endless love for your family. You have power by just showing up and being you, even when it's hard. God bless you.

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  4. I suffer from fibromyalgia as well, but I can't imagine that in conjunction with RA! I am so sorry for all the pain you're experiencing....physical and emotional. You are in my prayers daily!

    I don't know how much stock you put in natural remedies, but have you heard of drinking raw, organic apple cider vinegar? 2 tbsp in 8 oz of water 2-3 times a day is supposed to cure a variety of ailments. In particular, what might help you most, is that many people say they notice that their quality of sleep improves greatly and they are able to better function during the day. Aches and pains subsiding seems to be common as well. I just started doing it this week. Might be worth a shot!

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  5. Kate, you are so inspiring to me. More than you can ever know. Today's post really hit home with me and now I am crying. This morning I was numb, unable to cry, feeling emotionally and physically bad, and stayed in bed most of the day. I have to remember your mantra... except to say instead "Honor Emily in all that you do" Just like you, I cannot let my daughter's death destroy me. I have struggled greatly over the past 3 years since she passed. Been in the hospital, diagnosed with a mental illness called borderline personality disorder that I have struggled with my whole life, (but her death put me over the edge)I need to learn to cope and get through this, as well as a complicated divorce situation. I have 3 other children who need me, one of them who has Tourette's syndrome and autism with severe behavioral challenges. You are doing great.... keep moving forward, one step each day. I would like to tell you it gets easier, but for me, it hasn't, because of my own issues and multiple life issues that have resulted as a cascade after Emily died. As long as you remember your mantra, you will get through. You have to, there is no choice... Just know that as you go through your daily struggle, there are many others, myself included, inspired by you. You inspire me.... Really, you do... Thank you from the bottom of my heart. Carolyn

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    1. Adding you to my prayer list too, Carolyn. It sounds like you have a lot on your plate.

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    2. Sending love and positivity your way from Calgary, Canada!

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  6. Oh Kate. My heart - which has not known near the heartache that your has - breaks for you. I wish I was there to help - to play with Brian, to clean your house so you could play, rest, or simply be. To hold your hand as you tackle all of the unthinkable tasks on your to do list. Know that you have support all around - we grieve with you and for you.

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  7. I've been following your journey these past few months and my heart aches for you.... even though we are 3000 miles apart and have never met, you and your family are in my daily thoughts and prayers. Your sweet boy is looking down on you, his sweet mommy, with a smile on his face im sure. May God bless and keep you in his love. Many prayers from a mommy in Oregon. :)

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  8. It's OK to hurt and grieve and, yes, complain. I know there are many of us who will listen with deep love and admiration. Everything you do to honor your son is awe inspiring.

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  9. I'm sorry you are dealing with so much physical and emotional pain! No one should ever have to bury their child. :( Good job on being a good mother to Brian and good wife, despite everything you are going through. You are a strong woman, I'm not sure I could handle all of that as well as you are.

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  10. Kate: Sending good, healing thoughts your way. Words aren't enough to help but I hope you take comfort in knowing that there are a whole lot of us out here routing for you and your family. You've got your goal in sight, "honor Gavin", and even though the path may be rocky... You. Will. Succeed. We know you can.

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  11. Low impact exercise is supposed to be helpful for arthritis. It's easy on the joints and it keeps them moving so they don't get stiff. Maybe an easy swim fitness class at the Y? You might be the only young one there, but those old ladies will probably kick your butt just like they do mine!

    I'm praying for you to receive both physical and emotional comfort and healing. It's ok to angry, upset, complaining. You just went through the worst thing a parent can go through. We're not here to judge you for the way you grieve. Everybody grieves in their own way. We are here to listen to you and give you the support you need as you begin to heal.

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  12. Sorry to hear about the RA. I suffer from it too and I do mean suffer. Hope you are feeling better soon. If you find a decent medicine that works well, let me know.

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  13. My uncle used to suffer from RA and for him the best exercise was swimming at his own pace. And if you are into natural remedies, both cinnamon and honey are supposed to be good for helping RA symptoms (a tablespoon of each mixed together, twice a day. It's supposed to take a few days to get into your system). I hope you can find relief. I have fibro, and I can't imagine having RA on top of it.

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  14. You can do this Kate, for yourself, for Ed, for Brian, for your baby, and most of all for Gavin. Will be praying for you.

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  15. May the Lord give you relief, strength, and energy to keep on going in the midst of all of this which is just too much. Lots of love to you from California.

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  16. I have just gone through the majority of your blog. I was so shocked to read of Gavin's sudden death. He was just an adorable little guy. I don't want this to be long but I understand to a great extent what you are dealing with as far as the scariness of being preg.,not to mention everything else on top of that. I have 3 kids,now young adults. I was pregnant 8 times all together. My first,Daniel,was born very unexpectedly at the same time as your Darcy. I had no idea really that this happened to people until we lost Daniel. The rest of the pregnancies were early losses. We also lost a set of twins. We only know that because we saw them very early on an ultrasound. One tends to envy those who go through pregnancy without having to worry about every little twinge! With our second son, about midway,I lost a huge clot. Thankfully,that was all it was but a big scare nonetheless. Prayers as you journey on with everything you are dealing with.

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  17. Kate, I understand that you will probably never read this, but I still wanted to tell you....I hope it brings some comfort and many, many strangers are praying for you daily. My prayer is simple..."Help Kate. Give her strength and comfort." God Bless you, my cyber friend.

    Susan from GA

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  18. Denise Pinion from OklahomaMay 18, 2013 at 11:14 PM

    God bless you Kate! May He pour down blessings, grace, mercy and only the healing He can bring. My heart hurts for you. My bones hurt for you. I pray that tomorrow is a better day for you. I pray you can get the rest you need. I pray that the needy/greedy/ selfish people leave you alone. I pray that everything you need in the moment you need it-works perfectly in your favor. You are AMAZING and such an AWESOME witness to others! Thank you for sharing your life with us. We learn so, so much from you!

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  19. Oops, there I was, commanding you to go to bed early. I hope you have some good meds that help with the swelling/pain (if you couldn't already tell, I am all for meds). Kate,I have never, ever seen another mom honor her child quite like you have. You honor him here, on Facebook, in the major donations you have made, in the countless good deeds done in his honor. Gavin is honored everywhere. xo

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  20. I'm glad you continue to share your story, where you are at, what you are feeling. I don't know how much it helps, but you are in so many people's prayers and thoughts, being cared about from a distance, with no expectations placed on that bond.

    I hope that you will continue to feel open in sharing your truth (that those people who want something from you have stopped emailing and asking) and that you will get only positive support.

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  21. I am so sorry for all the pain you had on Wednesday. Your doing an amazing job pushing yourself to honor your entire family. To think that you are doing everything you can for your family, being pregnant, grieving and then to also add Rheumatoid Arthritis combined with Fibromyalgia my heart aches for you. Keeping you in my thoughts and prayers. ((HUGS))

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  22. I started reading your blog several weeks back (a friend post story from your blog on Facebook).
    Your story is incredible and i admire your courage and power to speak about your experiences and keep moving forward.
    I have read about Rheumatoid Arthritis problems and Fibromaialgia. I'm trained as a scientist in biochemistry and experience in gene therapy. I respect the discovery of science I'm also passionate about plants and natural remedies. My medical background (biochemistry, molecular biology had help me to understand the mechanism of diseases and use plants to help relieve the symptoms.

    Plants are great for pain and for the body and detoxification. During times when the stress lever is high our body fills with toxins, plants are really excellent to remove them. I know you are pregnant and some plant treatment is limited during pregnancy but we can try together to find a appropriate therapy approach to ease the pain. I read your posting and i can understand how frustrating is to not be able to get ready in the morning and help your kid to go to school.

    Plants are miracles but they work slowly and you need to have lots of patience until results are shown. My boyfriend is my 'testing patient' when i prepare a new lotion a shampoo, i always start on him. Few years back when i meet him he was suffering from polen allergy, special in the spring and end of summer. I spent several month reading about allergy and i found some tea and plant extract that help with the allergies. Next spring he had no allergy problems (after 15 year of Claritin every spring) and this year is the 3rd spring allergy free.

    My email addresses is maittica@yahoo.com). What you need is a health store near by, that have teas plan extracts and oils and really be regiment about taking those remedies.

    The first advice for you will be a simple one every morning drink a cup of warm water with a teaspoon of ghee.
    Ghee is clarified butter and in this link you can see how is prepared. ( http://www.youtube.com/watch?v=SnXGhDugX7s)
    First think for your body is eliminate toxins.
    The way it works the fat component from this clarified butter solubilized the toxins from the gut, that accumulate overnight. You need to also brush your teeth in the morning before drinking this. This remedy is totally
    natural.
    In your case what will work is a detoxification cycle that can take 1-2 month and after that try teas for rheumatoid arthritis.

    In mean time, I can recommend to buy dandelion oil and ask you husband to make you massage on your fingers at night. Initial will be very painful, but pain in good in this case, during rheumatoid arthritis your joint fill will those cytokines and antibody (small molecules that are helpful in can of viral or bacterial invasion but when cytokines accumulate in joints the tissue surrounded became painful.
    Massage helps to remove those small molecules from the joints and sent them back in the blood. The only example about this small molecules i can give is 'the army'. When is a conflict army helps us to stay free but if you keep the soldiers in a city to much with no purpose they became aggressive and start vandalize the city of residence. Those soldiers get bored and ask help for other soldiers, that is the way this pain in the joints is generate. The massage help to spread those 'soldiers' back in the blood and your joints are free and the pain is gone.

    Im going to ckeck what other plants are good for rheumatoid arthritis and safe for pregnancy. I know more informations about Rheumatoid arthritis and less about fibromyalgia.

    Do you have any other problems? Diabetes? Hearth problems? Constipation? Low blood sugar?

    Hugs,Ade

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  23. I have so few words I can say, but I still want to let you know I'm here.

    Sometimes it feels like challenges and grief comes in one big bundle to distract us so we don't think more about the grief than we're able. (?) I think of my dad's homemade wooden stereo flying out of the back of his pickup truck and smashing on the side of the road after my brother died. Or the months of complications after my miscarriage plus my husband's skin cancer scare coming the same week.

    If a network of prayers could carry you, then let it be so.

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