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Venetia Sjogren
poet & self-proclaimed geek
poet & self-proclaimed geek

Venetia's posts

Was re-admitted to hospital last week, had emergency surgery. Discharged yesterday. Waves Hello to Everyone

Heading back to my second home - the hospital :(

I would like to thank everyone and humbly apologize for being incommunicado. Let me tell you what happened and is happening:

January 2016
I suffered a flare-up of my multiple sclerosis and was started on two (2) new medications. The multiple sclerosis has a firm hold on me and I, instead became sicker.

February 2016
I was hospitalized for two (2) weeks at two different hospitals and discharged approximately two (2) weeks later. During this time my daughters were as always, attentive to my needs and concerned because I have not suffered such a devastating multiple sclerosis flared in over ten (10) years. My brother comes to visit. I am unable to reach my mother who lives in Texas; I live in New Jersey.

March 2016
I have back-to-back seizures at home and am rushed to the emergency room. I never stopped seizing. I ceased breathing and the doctors have to implant a nasogastric tube (to feed me) and a trachea (to aid in breathing).

My daughters are informed that it is not typical for a person to keep seizing when they have lapsed into unconsciousness. I NEVER stop seizing. My girls are all alone with no one willing to comfort them. The doctors doubt whether I will survive. My sister, Kristin is frightened as are my children, my adopted niece and her children. Her eldest child is my goddaughter.

April, May, June, August
I am moved to a long-term care facility where I drift in and out of consciousness. When awake, I am unable to think clearly and am unaware that I have lost a substantial amount of weight. I sleep a lot. My kidneys finally fail. My stepmother visits and calls frequently and I am sure my hospitalizations remind her of my brother’s death.

September 2016
I am re-admitted back to the hospital where a permanent catheter is surgically implanted in my chest and dialysis is started. I become extremely depressed and I swell up as big as a human-sized whale. I avoid mirrors since I look like a bald skeleton because my hair has fallen out.

October, November 2016
Finally, I am strong enough to enter a nursing home where dialysis is continued and a physical rehabilitation is started. I am unable to walk or even crawl. I cannot remember facts or events that have happened. My eyesight comes and goes. I suffer severe tremors and have a problem eating. I continue to lose weight. I ask my kids the same thing over and over and am convinced that I have had a permanent worsening of my multiple sclerosis which is later confirmed by my neurologist. I am frightened that I will die a drooling, paralyzed child.

November 2016
I am discharged from the nursing facility as my insurance will not pay for any additional days. I have a home-health nurse and a physical therapist. I still cannot walk but can crawl. I fall everyday when I attempt to walk but persevere but if I do not, the chances of my every being able to do more than crawl is slim. That is unacceptable. However, I do have to accept that I need a kidney transplant. My son and sister offer their kidneys. Once my transplant evaluation is completed at several hospitals, they will be tested.

December 2016, January 2017
I turn 59 years old in January. What a screwed up birthday. I do not know whether to cry or laugh after enduring a shitty 2016. I AM grateful though that my kids, my sisted, step-mother and friends have been so emotionally supportive.

I am on total Parenteral nutrition as I am losing 1-2 pounds per week. I have now been in addition to all my diagnosis, designated as being malnourished. I am given more drugs in order to stimulate my appetite. A new medication that the doctors want me on costs $967. I cannot afford this drug or the one where the co-pay is $90.

So I am pleading for your help. AGAIN. Thank you.


January 2017
Heading back to emergency room. I had surgery this month and it looks like I may have another blood clot. Previously, I had one in my head from seizing and my head banging against the floor and another in my left leg. My arm is swollen to twice its normal size.
I wonder why my death is such a long-drawn out, painful affair. I am tired of this fight.

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Not very attractive but unfortunately exactly my new monstrous appearance....sigh....

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hospital 2016. Feb to April
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Help by donating or share with your contacts. You may help save my life! Thank you.

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Am very sick. Checkout my go fund me post please.
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