And life continues

General Blog
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I am so exhausted today. I decided to just stay home and try to sleep because I think I have been averaging about 4 - 5 hours sleep the last few weeks. Surprisingly, I am not hurting as much as I thought I would be.

The last three weeks have been such a blur. My sister took a turn for the worse and was found in her room unconscious. It wasn't the Leukemia; it wasn't the graft vs. host; it turns out she had an infection that wore her body down resulting in a heart attack which left her in a coma for a week and half. During this time, my life consisted of going to the hospital every day-all day, driving 3 hours (1 1/2 hour there and then 1 1/2 hour home), hosting my out of state family, and being extremely exhausted. As many of you know, I have been trying to step up and take care of her. All though she had been in a physical rehabilitation home for a few weeks, prior to that I had been making the long trip to her house every other week to fill her medications and whatever else I could do to help her. Three weeks ago, she buzzed for her nurse and when the nurse arrived, she was unresponsive. After rushing her to the hospital, she spent the next week and a half in a coma before eventually going on her heavenly journey.

The last week, I have thrown myself into preparing her memorial service and taking care of all the details. I didn't let myself rest until I had everything taken care of and finalized. Her service was yesterday. It was beautiful, positive, and a great tribute to her. This morning the rest of the family went home and my husband went back to work. I am so physically exhausted that I just sat in my chair or laid on the couch - all day. My mind keeps railing about how surreal the last few weeks have been and I cannot stop thinking about her. I know she is so better off now and with our family members who have moved on before us. However, it has raised so many questions regarding being a member of the 'immuno comprimised' group.

While the doctors were talking to us, they said they felt she had an infection, however there were no clues - no fever or any of the typical things you would relate to an infection. This alarmed me because some of my meds lower the immune system. I am now questioning everything regarding scratches, allergies, and anything that makes me feel different. I am so scared of unknown infection especially if I go to the doctor and they me I don't have any of the symptoms. A couple days after her death, I was supposed to take my 3rd Humira shot and freaked out a bit. I ended up taking the shot but have been worried about everything since. Allergies have been horrible this summer so I have been watching out for sinus infections. I feel like I am over reacting but how can you realize infection if there are no signs? Honestly, I am grieving, crying at the drop of a hat, worrying about things I can't control and waiting for the stress induced flares to hit. To top everything else off, I start back to teaching in two weeks (actually one - have to set up the two rooms).

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My deepest condolences on the death of your sister. I am very sorry for your loss. My sister has been very ill lately and it is very difficult. My understanding with biologics is they only suppress one small part of our immune system. That most of our immune system is up and functioning normally. And the part of our immune system that is suppressed is the part that was way pver active making us very sick. Your sister with leukemia had a very suppressed immune system. Unfortunately many patients who die of infection are also having multiple systems fail. And with many systems failing they are unable to fight off an infection that most everyone else could. Again my condolences. Be sure to take good care of yourself until you recover.

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I'm so sorry for your loss.

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Spinning Diva--I'm very sorry for your loss and for how you had to cope with things seemingly single-handed. I hope that you do get some rest and take some time to get back into yourself (mentally and physically). You've given a lot of yourself to others lately and I hope you can give yourself permission to care for yourself in the same way. Best wishes to you as you grieve for your sister and find some peace for yourself.

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Oh, Diva, I’m so very sorry. I was wondering how you were. You looked after your sister and your family admirably, my hat is off to you. And now it’s time to look after yourself in the very best way possible. Take time. Take the Humira. Rest, recover and recuperate. Your nearest and dearest need you, as will those kids at the start of the new school year!
Our thoughts are very much with you.

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Hi Spinning Diva, I am sorry to hear your news about your sister. Unfortunately I can relate. My older sis, Laura, died over 3 years ago. That is when my PsA really started flaring in my hand. I’m sure it was the stress.

I also used to say it was surreal. I watched her die over a 5 year period and even tho we knew it was stage 4 from the get-go.
I can also relate to the fear about my own health. It has lessoned some with time. I am considered high risk do they do yearly mammogram and an MRI. It was really scary in the beginning.
I found counseling and a grief group somewhat helpful. Glad you are tasking care of you now. Blessings…

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You have my deepest sympathies for the loss of your sister. Bless your heart for all you did for her! I’m sure she is smiling down on you from heaven.