Keep Me in Your Thoughts ...

Chat about anything and everything
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Zilvrae
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Re: Keep Me in Your Thoughts ...

Post by Zilvrae » 12/14/15

*hugs* Cancer sucks.

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Zilvrae
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Re: Keep Me in Your Thoughts ...

Post by Zilvrae » 12/23/15

Time for another update on my father's surgery. Last week he was discharged from the hospital directly to a rehab center. This is not at all surprising. I mean, a piece of his intestine is sticking out of his abdomen, leaking urine into a bag. Yes, that looks every bit as gross as it sounds.

This rehab center he was sent to serves as both a rehab center for short-term rehabilitation and a nursing home for long-term patients. While it is definitely a much nicer place to stay than a hospital, it can't help but be a depressing place to be. I've never heard my father be more depressed than when he was there.

Anyway, originally his stay was expected to be 2 weeks, which would have meant not coming home until New Years. But he was both desperate enough to get the hell out, and stubborn enough to push himself, that he passed all the requirements for proving his basic mobility and ability to care for himself. He was discharged and came home today.

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Slipps
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Re: Keep Me in Your Thoughts ...

Post by Slipps » 12/24/15

*hugs*
Well wishes, Zilv.

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Re: Keep Me in Your Thoughts ...

Post by GloomPixie » 12/29/15

My great uncle died Sunday. He was in very poor health and this is not unsurprising. However, he was the one sibling of my Grandma Dial I got to know really well (all the others were either out of state or died while I was too little to care much about preserving family stories), so I miss her all over again too.

He always made me feel ageless, like we'd all just keep going along in life anyhow. Like the silver at my temples and the crow's feet around my eyes were illusions. He would call me "Missy" when we saw each other. When his wife, my great-aunt, died, he was heartbroken I couldn't stay for the whole dinner after the funeral, but he understood that I had to get back to work and that I would have stayed until dark listening to him and the rest of the family tell stories if I could.

He could tell stories with the best of them.

https://www.legacy.com/obituaries/dispa ... &fhid=8714

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Slipps
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Re: Keep Me in Your Thoughts ...

Post by Slipps » 12/30/15

*hugs*

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Morenin
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Re: Keep Me in Your Thoughts ...

Post by Morenin » 12/30/15

My mom is going to the hospital with severe stomach pain and a fever. Nervous.

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KrystaNyssa
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Re: Keep Me in Your Thoughts ...

Post by KrystaNyssa » 12/30/15

I've been keeping it rather close to the vest...but I've not been able to go to work since October 26, 2015....I've not been able to walk unassisted. I just got back from the second MRI...and they called. They want to do further testing, but say I have issues on my spine which may indicate MS...they are calling to schedule more tests to confirm before they start treatment.

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TinweSaa
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Re: Keep Me in Your Thoughts ...

Post by TinweSaa » 12/30/15

/hugs everyone....

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Slipps
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Re: Keep Me in Your Thoughts ...

Post by Slipps » 12/31/15

*hugs*

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KrystaNyssa
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Re: Keep Me in Your Thoughts ...

Post by KrystaNyssa » 01/01/16

For those of you who don't know and for those who know some ......

I can home Oct 23rd with swollen legs which hurt so much I couldn't walk. I laid down with my legs up hoping it would pass. I had already scheduled a doctor's appointment for the following Thursday. When I woke up Saturday, I couldn't walk...I had to have help even getting to the bathroom. I lost my voice due to Sinusitis as well.

I called out of work because I couldn’t talk on Monday and Tuesday. Wednesday I called out because I still couldn't walk. I let them know I had a doctor's appointment the next day. I was hoping for something to just fix it. He was unable to fix it. He sent me to a neurologist.

The neurologist did a MRI of my lumbar area and a nerve conductive study. The MRI showed a slightly compressed bulging disk and a cyst on my lower back. I also started physical therapy at this time. The nerve conductive study showed no damage to my nerves. It did show slight non-diabetic neuropathy. Blood work showed nothin...not even diabetes....my blood sugar was normal even.

So I was sent to a pain management neurologist....he ordered another MRI to cover my upper back and neck with and without contract (dye).
All this time, I'm still unable to go into work and my sleeping and waking hours have been totally turned upside down.

Thursday was the MRI. I didn't expect to hear anything till next week. .however Dr Houser and Dr Berry called about 5 pm....

They found lesions on my spine...that look like MS....so they have ordered a bone scan, lumber puncture, snd a brain MRI with and without contrast (dye).

I've not gotten a full diagnosis and there are two who are going to be far more upset finding out this way. Sorry to anyone who wanted a more personal.... I have honestly had little time to comprehend and get over what this means.

The tests are to confirm MS and see what level of the disease I'm at. ...I don’t know what is next.....or what will happen on Friday when I should get the results.....I'm hurting and scared.... Angus (Telfin/Inmora/Peppas), Sarah, Jareth (Abaja), and Margie (Alexsandrah/Aajia) have been great and supportive. I love them. I love you all. I ask for positive thoughts prayers and support. .... I don’t know if I can go back to work...and I'm asking about the possibility of working from home...but not sure the doctor or work will let me.....or the disease.

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Re: Keep Me in Your Thoughts ...

Post by Cassidhe » 01/01/16

~hugs Krysta~

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KrystaNyssa
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Re: Keep Me in Your Thoughts ...

Post by KrystaNyssa » 01/01/16

*hugs back*

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Zilvrae
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Re: Keep Me in Your Thoughts ...

Post by Zilvrae » 01/10/16

Welp, my father is back in the hospital again. Looks to be a kidney infection now.

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Slipps
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Re: Keep Me in Your Thoughts ...

Post by Slipps » 01/10/16

*hugs*

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Re: Keep Me in Your Thoughts ...

Post by Lillya » 01/14/16

Some people know that I was in the hospital over new years and that I could have died had my husband not acted so quickly in summoning the EMTs. I have a blood clot that has invaded both lobes of the lung that is saddling over two arteries. This is putting enough strain on my heart that it is enlarged and my normal tachycardia is acting as if it is on steroids. I am at home, but dealing with the side effects. I am severely anemic, I am having issues with pain while breathing, I am coughing up crud that is blood tinged, and what is the worst side effect right now, is the neverending 2 week girl times. Due to severe risks, I can not take my normal pill that regulates this. Instead I am on a 4x dose of progesterone only.

Exhaustion is exhausting.

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KrystaNyssa
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Re: Keep Me in Your Thoughts ...

Post by KrystaNyssa » 01/26/16

I went to the doctor on Friday, he worked me into his schedule.

He says that they have basically eliminated everything except Mutliple Sclerosis. He says this probably wasn't the first attack/relapse. I probably didn't notice because it was only in my brain. There were no lesions in my spine at the time so it probably seemed just like a headache....My mind flashed on the migraines I've had since 2008.

This attack/relapse/flare-up/exacerbation was the first with lesions in my spine. The fluid had issues getting past so my body reacted as it has. This means I have secondary-progressive MS....I've already moved past relapsing-remitting MS (RRMS).

Definition: Secondary-progressive MS (SPMS)
The name for this course comes from the fact that it follows after the relapsing-remitting course. Most people who are initially diagnosed with RRMS will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses.

After going though all the treatment options, injections - every other day or three times a week; infusions - once a month (like an IV drip); and oral with varying dosage and success. They are putting me on Tecfidera (dimethyl fumarate) which is almost as good as the infusions which has the best rate of remission rate. However with my needle-phobic issues, this seems the best avenue for me.

Brand Name: Tecfidera® (U.S.) (teck-fi-DARE-ah)
Chemical Name: dimethyl fumarate (dye-METH-il FOO-mah-rate)
Usage in MS: Disease-Modifying Agent
Generic Available: No
This is an oral medication in capsule form.
Description:
Tecfidera® is an oral therapy contained in capsules taken two times per day. Tecfidera, formerly known as BG-12, is dimethyl fumarate, a formulation that was developed specifically for use by people with multiple sclerosis. A chemically related compound, called Fumaderm (dimethyl fumarate and fumaric acid esters), has been used at higher doses for decades in Germany to treat acute flare-ups of psoriasis. Although its exact mechanism of action is not known, Tecfidera is thought to inhibit immune cells and molecules, and may have anti-oxidant properties that could be protective against damage to the brain and spinal cord.

The way this works in the drug company is sent the prescription and they process it. Then they work with me and the insurance company to take care of the money involved. They send me the medicine to my house. They works refills and such through them. It is a gradual dosing scale on the start up.

He says once it is under control, in remission, and with physical therapy, I should be able to walk again normally though my balance will never be back to what it was completely. At that point, I should be able to go back to work....and work my normal schedule. I go back to the doctor on March 2nd to see how I'm progressing.

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Re: Keep Me in Your Thoughts ...

Post by Ceela » 01/30/16

Even with therapy, the darkness that is BPD is swallowing me up once more. The fear of abandonment and abandonment have hit me hardcore the past few weeks and I feel like that plus the resurgence of depression has me drowning.

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Re: Keep Me in Your Thoughts ...

Post by Inqe » 01/31/16

Stay strong, Ceela.

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Re: Keep Me in Your Thoughts ...

Post by Ceela » 02/02/16

*hugs inqe* Thanks for the encouragement.

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Re: Keep Me in Your Thoughts ...

Post by Sibelle » 02/10/16

My gut turned out to be right. My father was found dead in his apartment just a short while ago. I'm trying to get ahold of my step mother and his brother and having trouble.

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Tajar
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Re: Keep Me in Your Thoughts ...

Post by Tajar » 02/10/16

I am so sorry Sibelle *hugs*

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TinweSaa
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Re: Keep Me in Your Thoughts ...

Post by TinweSaa » 02/10/16

/hugs and thoughts and prayers everyone...

My condolences Sibelle...

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Zilvrae
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Re: Keep Me in Your Thoughts ...

Post by Zilvrae » 02/11/16

:( *hugs*

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Lysari
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Re: Keep Me in Your Thoughts ...

Post by Lysari » 02/11/16

I am so sorry Sibelle. Thinking of you.

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Lily
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Re: Keep Me in Your Thoughts ...

Post by Lily » 02/11/16

I am so sorry, Sibelle. My heart goes out to you and your family.

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