Author Topic: New Topic: Information Update on Sass  (Read 11320 times)

Ark mom

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Re: New Topic: Information Update on Sass
« Reply #30 on: June 15, 2012, 07:07:20 PM »
Sass, you are in my thoughts.  I will be on this journey with you!   Hugs to you! 
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

sass

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Re: New Topic: Information Update on Sass
« Reply #31 on: June 16, 2012, 02:39:56 AM »
So., here I am again.  I have been awake about an hour, trying to fall back to sleep.  But I did get some good rest.  I slept well in those 3 hours. 

I awoke with my chest tight, heavy and a slight smothering feeling.  Nothing too bad, but enough to make me just slightly nervous.  Once I sat up, it got some better, so I relaxed and I decided  to sign on. 

With those thoughts in mind, it has provoked another.  I am very apprehensive about leaving the Houston area.  I am nervous about returning home at this time.

We live in a very rural area.  Our home is isolated at the end of a dead end dirt road, with us being the only inhabitants on it. 

Ambulances do come out there, but would only take me to the little county hospital and they would not know how to treat this.  Life flight would only take me  somewhere if I have an immediate life threat.  And they have to be called in as well.

Both doctors barely mentioned it and that caught my attention, for I had already had that thought growing. 

But it was just now, with waking like I did, that I felt some misgivings.  Hubby wants to--has to--return to the woods.  He was not opposed to staying this second night, but wanted to return home yesterday.  I could see his disappointment, but I could not make the trip.

And, I felt the need to stay here.  One, I know what heavy changes I am feeling.  Two, as alarmed as the doctors are, they ARE looking at films from APRIL.  It is mid June.  I know there will be changes on this new CT.  I wanted to hang around,in case they happened to get it in early.  But now with it being Saturday, I know it will be Monday anyway, before they return to see it.

The Rheumy spoke of getting me on meds immed.  This is Urgent, in fact an Emergency.  I don't want you to wait.  You need to get help now.  He wanted to talk to the Pulmonary.   And they did, with the decision to wait until after the biopsy to make any changes.  If they mask what is going on with some meds, then the biopsy will be compromised.

So, I am like , let's do it, but alas, again waiting on the CT Scan to get back from Radiology.  FLUFF!.  That CT was ready to read before I got out the door.  Now the report, maybe not.  But they do not read them in detail anyway.  They go by WHAT THEY SEE.  I know, he said, he has to have it to guide the biopsy. 

So, me being DR.Sass, and knowing enough to be truly dangerous, is knowing there has to be a reason of not going straight into it, but being wise enough to know, it can be done immediately in Houston.  There is no night and day.  But my Pulmonary is just one person as well.  Then the Evil part of Dr Sass, wonders, hmmmm, out of town trip, golf match, guest from out of town coming in.  Concert tickets. Visitation with the kiddos.

oh pooh, the rantings of a mad woman!             I can't have my pain management shot in the spine.  It is  considered a surgery, and I can't take that risk, so here I lay, sit, lean, sit, lay, stand, sit with this other pain in my back and legs and try to push it aside.  Nope, can't take Ibuprofen (Barrett's)..can't take aspirin ( Possible Surgery), Vicodin...trying not to go down that path, and when i relax to deeply, my 02 levels really drop, setting off the alarm on my oxygen.  So I am laughing out loud at the at the whole thing.

We have a saying in our family, in fact two that is a sarcastic response to many of a frustrating situation....IT JUST DON'T GET NO BETTER,,,,,,,,and  I WOULD'NT HAVE IT ANY OTHER WAY!!!!!!!!!!

HOTEL ROOM 165 FIRST NIGHT, ONLY HAD A SUITE FOR SECOND NIGHT LEFT, 185.  THAT IS MEDICAL RATE, with all taxes and parking fees.  I can't afford to stay!  still waiting on short term disability from work and approval on my 2nd hospital confinement, then my critical care package to kick in.  This is supposed to help with lodging, gas, food..  Of course I am now having to pay for the full premium on my insurance and on this supplemental health package.  At $600.00 a month, me little disability ck will all go there, if I have enough.  but will still help for sure.

The guy at the Social Security office said I do not qualify for SSI (what is that), but suggested some other programs.  I need help!!!! 

My children would gladly, but are so tied down.  Daughter with 8 yr old and newborn, husband works 7 on 7 off.  She has no time as it is now. 
Son, with both he and his wife with new jobs, new city, 125 miles away, the twins, one ear infection, and Callie going to heart doctor this next week after, signing on there new house on the 22nd.  2 weeks to move out and in, well I should be helping them.

Nope, husband not capable.  Remember he is disabled in both hands and in a great deal of pain himself.  Plus 85 yr old father at home alone right now....not good

I do not tell you this for sympathy, just pouring my heart out.  so enough.. God will provide.   ~sass~

rudytudy

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Re: New Topic: Information Update on Sass
« Reply #32 on: June 16, 2012, 05:13:28 AM »
Please pour your heart out to us often.  We walk this journey with you as best we can.
You remind me of my Mom in her journey and we have lots of love for you.
Sense of humor is one of our greatest gifts I think.   Keep us posted... 
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Lupus, SJS
Lupus Inflammatory Arthropathy, subcutaneous lupus, photo sensitive, neuropathy, fibromyalgia.
SS-A >8.0,  SS-B  1.9,  ANA positive

Gabapentin, Fosamax, punctal plugs.

Fish oil, D-3, B-complex, eye drops, saline nasal spray

gardenlover

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Re: New Topic: Information Update on Sass
« Reply #33 on: June 16, 2012, 06:07:42 AM »
This is super news!!  Thanks for sharing with us!!  You've been in my thoughts and prayers.

iraisin

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Re: New Topic: Information Update on Sass
« Reply #34 on: June 16, 2012, 06:35:51 AM »
Good morning Sass,

The medical center can be a real maze and very expensive. Money is so hard to come by. I know Houston very well and can help you shop for more reasonable accomodations if you like? There's also and organization here called "Ronald McDonald" house that may set you and your family up for free while you're here. I also believe that St. Luke's has patient advocates on staff that can help you maneuvre through the system very well - may even help you with guidance on your benefits.

the medical center is huge and organizations are abound. So many resources here with all the variables that come to town to see our great doctors.

Please let us know how/what is the best way to help you - even if it is just being a willing ear.

You are such a gem. I hate thinking of you going through all of this and deficits you may be having on top of it because of your pain/illness.

Below is someone you can contact if you're compelled that might be able to answer some questions and find you resources.
Sjogren's Foundation (Houston)
Support Group Leader:
Shani Corbiere
sjogrens@att.net

Iris

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Re: New Topic: Information Update on Sass
« Reply #35 on: June 16, 2012, 07:37:52 AM »
I'm so glad to hear you don't need a lung transplant, Sass.. I will keep praying for you.. 
Sjogren's Syndrome, fibromyalgia, essential tremor, RLS, degenerative disc disease, gastritis, Ischemic colitis, heart disease.
Lisinopril, Pantoprazole, Ranitidine, Plavix, Diltiazem, Simvastatin, Magnesium, Aspirin, pain meds, serum tears, fish oil

eye2dry

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Re: New Topic: Information Update on Sass
« Reply #36 on: June 16, 2012, 07:52:27 AM »
Sass......go ahead and pour your heart out...we'll listem...help if we can.....worry for you...pray for you.....

I know exactly what you mean by "husband has to get back to the woods".
We live rural and have woods, creek,etc.....and my husbands roams over it all EVERYDAY.....he's always been like that....busy cities, lots of noise and people make him anxious to "get away" to his familiar and safe home/property/woods.

I pray things will go faster so you can get home sooner. I pray somehow the info provided above by irasin will make it a "cheaper stay".


As I go goo through my weekend...I'll be thinking of you.


eye2dry

quietdynamics

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Re: New Topic: Information Update on Sass
« Reply #37 on: June 16, 2012, 01:22:06 PM »

Sass...I thought the Dr. was going to admit you for 7 days?

Since you had more breathing problems last night, the alarm going off.... can you call the Pulmonary specialist and explain that you live in rural area, cannot afford the motels in Houston,  would have to go home and would not have immediate medical access, etc.,and ask to be admitted, for monitoring, tests, etc.  Drs. know the insurance codes to write to get it done if they can.

Then your husband can go home if that works for both of you.

My Mom and I are sending our prays....reach out to your Dr.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

sass

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Re: New Topic: Information Update on Sass
« Reply #38 on: June 16, 2012, 04:37:31 PM »
quietdynamics,
 I wish I had read your post earlier, but alas I am home. He was not planning on admitting me till they get the scan back and can figure out where he needs to go in at and what approach to take.  That confuses me too, URGENT< EMERGENCY<  why are they not doing something now??????? Anyways I am at home  And I am crying my dry eyes out.  Yes, I am one that although I have dry eyes I can produce some tears still.  lucky me.

So, i have poured my heart out, exposed my wounds to you guys, but this I must go it alone......

Having some problems with my Dad among other things and I have to find someone to be with him for the time I am gone. 

I am alone, trying to get some loose strings tied up and I feel so alone too! 

I want to quit

Cricket

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Re: New Topic: Information Update on Sass
« Reply #39 on: June 16, 2012, 04:53:20 PM »
Sass

You hang tough, I know it is hard but I believe you can do it! I don't know all you are going through, I do know it is not an easy road and isn't going to be , but you are going to come out on the other side!

I will be praying for you and sending hugs! :)
Cricket

Female 64 yrs. old with:~Lymphoma ~SJS~, Fibro, Neuropathy, Spinal  Stenosis, Degenerative Discs, Shingles Arthritis, Hypo-thyroid.
Rituxan, Synthroid, Lopressor, Vasotec, Zantac, Zyrtec, evoxac, Lexapro, Neurotin, Ambien, Zanaflex, Voltarm, Vicodin, fish oil, Centrum vit.,  CoQ10, vit. D, Miralax

Gayle

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Re: New Topic: Information Update on Sass
« Reply #40 on: June 16, 2012, 05:08:05 PM »
Sass,

You can do this. I know it is hard and no, I don't know all you have on your plate but you CAN do this! Take your time, don't push yourself so hard. It will fall into place as you do little by little. Just stay positive on what YOU WANT to happen, it will. Hugs and prayers for you!!!
Gayle

irish

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Re: New Topic: Information Update on Sass
« Reply #41 on: June 16, 2012, 05:55:45 PM »
sass, Risking being a smart mouth at this time, I will tell you that there never has been the option to quit a job we don't get paid for. Being sick is one of those jobs. We are in it for the long haul. I know that you have what it takes to accomplish this task. Remember that fear can't win this fight and Faith is the weapon.

With that being said---I want to mention something that might help down the road. I can't help you right now, but others have given you lots of info and when you do get back to Houston you can talk with social services at the hospital and find some accomodations that will work for you. McDonald House is very good and I bet there is a lot more available if you ask.

When it comes time for you to come home again with your health issues why do't you ask your Houston doc (the main man) if he can have someone on his team dictate a letter to your family practitioner. This could also be something that could be copied and taken to the small hospital that you go to in your area. Have the docs write out your diagnosis and the important medical treatments and interventions to do when they get you by ambulance or if you show up at ER.

This way your basic and most important needs can be on a check list and done. Also, some of the info that they may need to anticipate things that could happen with someone with your health issues. It might help them be less fearful of you. It will help you and the hospital be more comfortable when speaking of your health issues. More understanding and easier communication.

I think it would be good if the ambulance team is aware of this info also. They also need to know that there are privacy laws. I am from small towns all my life, I know how it goes. Can't worry much about it though when they are trying to help us.

Now, as far as the doctors and the "immediately, emergency", this is the way it is. Those words are significant, but emergency to a doctor or ER means in immediate life threatening situation. You are ill but not an immediate life threatening situation as far as I can see. If you were so unstable that they thought you should be in the hospital, you would be in the hospital.

Doctors do a lot of talking to themselves out loud. I know, cause I have been through that and still am going through it. I have learned to just go home and wait. Things have a way of working out.
When Monday comes you may get a phone call to come back. You will just go back any way you can. You may have to ask the minister to take you back. Let them drop you off in the lobby and you can make plans later.

I know this sounds nuts, but think about it. Get dropped off in the lobby of the medical center. There is a place to eat, bathrooms, chairs to sit in, magazines to read, you have your cell phone and medications with you. What can go wrongn??? IF you get short of breath and can't breath, you are in the hospital. Make sure you have your toothbrush and a pair of clean underwear and a few clothes in a small bag. Also, make sure to bring some snacks with you that are nutritious.

I am being dead serious about this. See next page. Irish
 



irish

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Re: New Topic: Information Update on Sass
« Reply #42 on: June 16, 2012, 06:00:36 PM »
The important thing is you got to the hospital by hook or by crook. You will ask around to see where the Ronald McDonald House is and call them. You will do what you can and ask lots of questions.

The worst thing that can happen is you will have to slide a couple of chairs together for the night. Or, the nurses can find you some really comfortable chairs. You will be where you need to be. Also, I would find people to check on your dad. If you were thinking dad has to go to assited living, etc this may be the time, and it may be the neighbors/church/friends that have to do it. We can't be all things to all people.  We only do what we can.

You will get through this. You are money ahead of the game, cause you don't need a transplant so the prayers are working---was there any doubt???? e will all continue to be praying for you. Cry your heart out and then perservere with these tasks that lie ahead. Nothing is impossible. Hugs Irish

quietdynamics

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Re: New Topic: Information Update on Sass
« Reply #43 on: June 16, 2012, 09:20:47 PM »

Sass with all the twists and turns....try to go on auto-emotion with these Drs. Take notes at exams. Even one word...emergency? Exactly, what does that mean? (Of course I am writing this about YOU and in hindsight).

When I was 19, a Dr. told me I had cervical cancer and wanted to schedule surgery  ( I am 57 now).
I thought; I'll go live in Mexico and die in a village on the Gulf. While waiting for a 2nd opinion (my idea ), my Mom was a mess.
Turned out I did not have cancer. Of course Mom literally wanted to go up and K*ll the quack.

It is a Zen thing. I took a course in World Religions and I saw this beautiful thread of commonality.  The calmness is a bit like the Spoon theory, conservation of energy....balance the time of tears with the time of quiet.

A disease can take my body, part or whole
A disease can take my mind, part or whole
...........it will not take my soul.

As Irish pointed out and you know .... you are having blessings.

Tomorrow is Sunday...The Day of Rest.

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

eye2dry

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Re: New Topic: Information Update on Sass
« Reply #44 on: June 16, 2012, 10:02:30 PM »
Well said Irish.



eye2dry