Update - brother's wedding plans

[timer lady]

The trip is off. I rec'd a call from both the rheum doctor & the neuro doctor today. It appears my sed rate is sky high once again; another round of steroids for a month. Another month of compromised immune system risk. No hospitalization required at this time.

However, because of my already compromised immune system I need to stick around town until it's down by at the very least half of what it is now. I also need to "stay out of crowds", come in for my flu & pneumonia shots, push vitamins, etc, etc, etc.

In the meantime, time for another round of tests. There is concern that the infection in my central nervous system is back or has never been completely gone away. We won't know since I've already had 4 spinal taps since July & no one is going to do another for quite a while.

Fine....I'm heading down to my Dad's house for Thanksgiving - come hell or high water. husband is driving & we're going down as a family. The doctor's have until then to clear this up or I'm going anyhow. I'll wear those masks if I have to...

It took me a lot to build up my courage for this trip for the wedding....I know that it's not a good idea to leave town while my sed rate is so high. Too far away if I need medical attention.

I'm frustrated - I need answers! At the very least, I just need to heal & get well - with-o answers. :slap:

 

[mrscatinthehat]

Oh I feel so bad for you. Sending hugs and a shoulder (though I will keep my germs to myself). Take care.

Beth

 

[nvts]

Oh Linda, I'm so sorry you're going through this again! I don't blame you for wanting answers, this is nuts! Is there any kind of "super hospital" (you know, like the Mayo Clinic or somewhere "world renouned") that you can go to? I'm watching my sister go through the same diagnostic nightmare for over a year now and the relapses break her spirit and my heart!

Mucho prayers for you kiddo! I'm so sorry this is going on! The bright side is that you formed a plan and were commited to going and didn't let your nerves and fear win! A huge step for most and a wonderful milestone for you!

:sword:

You whipped fear! Atta girl!

Beth

 

[Wiped Out]

Linda,
I'm so sorry-I know you must be hugely disappointed. I truly am praying every day that the doctors find out what the heck is going on and they take care of you. Many, many gentle hugs being sent your way.

 

[goldenguru]

What a disappointment for you and for your family.

Boy, when it rains it pours doesn't it?

I'm sorry.

 

[busywend]

I am so sorry Linda. I am wishing for you some answers. With answers can come a resolution. Without answers just comes more scratching of the head. Answers, that is what I hope for.

Stay safe, stay home, stay away from crowds. It will be worth it.

 

[blb]

Linda,

I'm sorry that this is happening to you. I hope they find out what's going on soon!

 

[timer lady]

I'm hugely disappointed; oddly relieved. My body has been telling me something is up for the last 2 weeks & I've been waiting for blood work results to come back in...still waiting for new neuro doctor to call me. I'm calling once again today & then having my GP call.

I'm going for T'giving weekend - husband isn't too happy about leaving town on a holiday - leaving wm here. Suggested that he stay here while kt & I travel. Nope! Not happening. I'm no longer traveling alone in a car. I don't have the stamina to drive 6 almost 7 hours with kt in the car.

husband & I have wanted to make a trip out to Colo Springs to visit his parents. Think we can do this with kt; unlikely with wm. husband was trying to figure out a way for us to take separate planes or cars. No!!!!!

I personally don't care if wm is here "alone" on a holiday anymore. wm wants to be a part of this family, he knows what to do. It's been almost 3 years of out of home placement - he's yet to get a clue. With all the help & interventions, it's just not clicking. Part of it's hard wired - a good part of it is deliberate. He likes playing "poor orphan boy". Likes the drama & attention it gets him. Not at group home - out in the public though.

Funny thing is that as he gets older; less childlike more adult looking it isn't working out there either. No one cares.

Told husband I'm not putting the family's life on hold; not remaining in limbo because wm doesn't get it. Maybe if we leave town once & a while he'll start making some kind of headway. He'll not likely live here again - he may get visitation. He may get to come home for holiday dinners & other celebrations.

Thanks for the shoulder - I'm done with the whine. I need to get ready for PT & have a few blood tests scheduled this morning.

 

[Lothlorien]

Sorry that you are going to miss your brother's wedding. Glad to hear that you aren't going to risk your health for it. You are doing the right thing. I'm sure your brother is sad that you can't come, but he would want you to get better. You are doing the right thing for your health.

Hope you are feeling better soon. Have you been tested for Lyme's disease? I know it's not that popular to be tested out there, so maybe you should look into it. You appear to have quite a few of the symptoms.

 

[SRL]

I'm so sorry, Linda.

Ask someone in your family if they could link you via cell phone or webcam to the ceremony. It won't be the same as being there but it would beat waiting for the video to come out. ;-)

My best friend has a debilitating chronic disease so I've walked this same path with her before. It's so hard seeing the disease dictate so many area's of one's life. Actually it is Lyme and the same has crossed my mind as Lothlorien. Her first blood test was done at Mayo and it didn't pick it up.

 

[KFld]

I'm so sorry to hear you can't go. After all that work gearing yourself up. The most important thing is your health though. You don't want to do anything to jeopardize that.

Stick to the Thanksgiving plans. You deserve it.

 

[Suz]

<div class="ubbcode-block"><div class="ubbcode-header">Quote:</div><div class="ubbcode-body">Told husband I'm not putting the family's life on hold; not remaining in limbo because wm doesn't get it. </div></div>

Bullseye! You are absolutely right, Linda. It is a very difficult realization and acceptance...but it is what it is.

I don't know much about Lyme Disease but I sure as heck hope they ruled that out with one of your earlier blood tests......and if not, then they certainly should now. It can have devastating impact.

I'm sorry you are going to miss your brother's wedding. I can also understand your relief. Life sure isn't easy for you these days.

Hugs,
Suz