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I know I don't post often... I have little time, little energy, and am very burned out. Its been easier for me to stick to facebook where a one line update is all that I have to do and I can just avoid talking to people. I'm depressed to be honest... its all catching up to me.
But today... I have many prayer requests. I'll start with just my family.
Joey: he has a cough. While to many a cough is no big deal, just minor and normal this time of year... to me its the start of nightmares and sleepless nights. 3 years ago a "simple cough" turned into a life threatening disease I had never heard of that was trying to steal the light and life from my precious Joey. His lungs sound "junky" and I did call his doctors this evening... and they told me to try a few meds tonight and if it worsens to bring him in... possible admit him. I want to cry, scream, and throw things. Yes, I am that upset. I just want him healthy... feeling better... and HOME.
My sister: A few days before Thanksgiving she was admitted to the hospital with a blood clot in her lungs. Turned out she had many clots in her lungs, a large clot in her heart, and numerous clots in her arteries and major veins. In addition to that she had an infection in her heart. Today she is home, however we are not out of the "red zone". The infection in her heart is (hopefully) clearing but remains a huge concern. The clots are still there, most smaller, some "encapsulated", and a few gone. As of now her main diagnosis are Ehler Danlos, Dysautonomia, LQTS, undetermined clotting disorder, orthostatic hypotenstion (I think) and some kind of paralyzed (has to do with her heart and not enough blood getting to her limbs).
My mom: She had a skin biopsy done recently. It came back inconclusive for any one thing but showed many possibilities. One was that it was possibly viral, I don't know all the others. Her rash that was biopsied has "come and go" for years now, always going when she started using steroid creams. Which led her to be concerned that it might be the same or similar to what Joey has. No results on that test as of yet. However in addition, she has been having severe blood pressure issues. She, like my sister, has a form of dysautonomia. This is genetic... and I am almost scared to find out if I do as well.
DJ: He is still out of work. And I think he is losing hope. He has definately lost patience and is harder and harder to get along with. His PTSD is also pretty bad lately, and flashbacks have been more common. Some days its easier to just avoid him than deal with his moods. He tries his best to be patient but hes frustrated and feeling like a failure.
Me: I am flat out exhausted. And depressed. I dream all the time of the hardest events of the past few years. I wake up and panic that Joey isn't ok. I dream the older kids have LCH too. Or worse... HLH. I have gotten fairly good at reminding myself that everything is fine but there are those days. But I think for me, emotionally the hardest part has been... when Joey got sick I recreated my identity out of necessity. I became the fighting momma who never backed down, knew everything I could about the disease, treatments, side effects. I became the one who could cook dinner, talk on the phone, keep 3 kids from killing each other, and draw up and administer a dozen meds without batting an eye. I never forgot an appointment, or the time of one on a given dayy, even without writing it down. Now, I don't need to do 1/2 of that... and I forget 99% of the appointments unless they are written down AND in my phone... and email. And without all those things that need my constant attention to even the most minut details... I feel lost.
Now... prayers for others.
This first one hit me like a ton of bricks when I read it. There is a histio family whose son needs prayers. Treatment isnt looking good for him. But not only that but they have 3 other children and they just got the genetics testing back on those 3 kids. They ALL have the genetic mutations for HLH but do not, as of yet, have ACTIVE HLH. Now while this is confusing to some its like... imagine if each person has a box. Now each box has something inside of it. However some of us have defective boxes, but unless that box is damaged, you don't have to worry about whats inside. If a non-defective box gets rained on it still holds up, but if the defective box gets rained on it breaks apart and the stuff inside starts damaging everything. And you either repair the box till it can be replaced or the stuff inside keeps damaging things. Thats the best way I can think to describe it.
Also I have 2 unspoken requests for 2 different people I have the pleasure of knowing.
Finally, my friend has been told his sister may not make it through the week. Needless to say, the family is heart broken. This was unexpected.
Lots of HUGS and prayers for you. Especially around this Christmas season. Your whole family has gone through so much, it is time to break the chains that have been keeping you down and to set your family free.
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11.
Now with the kids out of school, I am sure everything is a lot more hectic. Do you have any plans during the Christmas break?
For DH has he though about even volunteering somewhere? Even if he is not working, volunteering keeps him connected with people which in helps to combat PTSD. Being cut off from others and isolating yourself is one of the aggravating factors of it. How is your PTSD doing? Please keep in contact with friend, family, neighbors, us here at the board, etc. I know it is hard but it will be worth it.
Rest, allow yourself to just be Mom for a while, instead of Super Mom, Which you had to be.
You and your family are in my prayers.
Now changing the subject just a little bit. Are your kids excited for Christmas? Got anything special planned?
Mattie, I have been trying to get out of the house more and see people, but honestly my PTSD as well as my germophobia (a direct result of spending the past few years, especially the past year, terrified Joey would catch some bug he couldn't fight) does keep me bogged down. I did get involved in CareNet at my church and that "forces" me to make 2 phone calls a week, 1 email, and every month to attend a "pod" meeting, which has been great for me.
As for Christmas, the kids are excited. We have done ALOT of special things this year. First of all we had 2 events with Make A Wish, the first being a breakfast with Santa, and the second being Dream Night at the Zoo (a private party for Wish Kids). We have been working on crafts as well. Today we're going to my moms to make a pine cone Nativity scene (using Pine Cones to craft each person and animal in the Nativity, assuming we have enough of the pine cones in the right sizes) as well as Pine Cone Reindeer. We have done lots of Holiday baking. Our church adopted David's project (Operation Stuff It) and is donating 400 stuffed animals this year! Because I don't have the gas money to be driving the stuffed animals to the hospitals we have chosen to recieve this gift, they will be delivering them this week. And we will be going to Church on Christmas morning, as well as Christmas Eve. I really LOVE the new church... it feels like we found a good fit even though it was a hard choice to make for DJ.
Augie... I saw the page posted on OHF, and from there found the blog page. Beautiful Chaos is the moms blog about it. As I read it, they indirectly mentioned Matthew and Andrew Akin, by explaining about not transplanting a child not in Active disease.
I will TRY to get on more and be more active on the boards. I think part of it is that I honestly don't even know what to say much of the time anymore.
Wow, lots going on here. Our faith only increases after coming out on the right side of trial. Keep pressing in, keep trusting, keep believing. Our God IS faithful, and He uses those He prepares. Praying for you, your family, and those you've mentioned here.
Much thanks to Alethia for my beautiful siggie and tags!!
Oh Traci!!! MANY MANY and PRAYERS for you and your family and friends.
This may seem strange because I don't really know you. I only know what you've shared here on JM. But I feel like the Lord put your name on my heart a few days ago. I didn't know why but I've been praying for you since. I'm soooo sorry you're still going through so much. But I'm glad you shared this with us. It's just nice to know what specifics to pray for.
I'm really glad to hear that you've got some good things going on for Christmas. And I'm especially glad that you've found a good church. That's a real blessing. I hope they can be of some support to you.
I would second Mattiez's recomendation for DJ to volunteer somewhere. Not only would it help him to feel productive but it might give him connections that could lead to a real job. That's happened to me before so I know it's possible.
Just a thought.....take it or leave it. Would you consider signing up for prayer partners here? It might be a good way for you to stay connected. Doesn't matter if you don't know what to say. If one sentence or one word is all you can manage we understand.
When you can't pray for yourself, surround yourself with people who will pray for you. Trust me, you have those people here.