Posts Tagged ‘urostomy’

Yesterday I went to see my neurologist. I finally got to use my new wheelchair.

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When the doctor came in the room he looked at me and said, “You look so good!! No one would know you have primary progressive MS.“ I’m never really sure what to say when I hear something like that, so I just smile. We discussed the infusion, the newest DMD (disease modifying drugs), Ocrevus.  He said he would get an appointment for me and the drug rep as soon as possible. He is very worried about the ‘serious‘ side effects. We all know that the medications for MS do come with very serious side effects. The problem for me, is my urostomy. I am prone to kidney and bladder infections as well as kidney and bladder stones. Because my immune system is overactive, it’s fights off some of the infection. If I am put on a medication that suppresses my immune system, I could very easily become septic. So I’m kind of screwed. At least he is giving me the option and I will be talking to the drug rep about it. Hell, I haven’t had a cold or a flu for so many years thanks to my overactive immune system. The only time I have gotten sick was when I was on a couple of the DMD‘S many years ago.

Then I did my normal, “I need prescriptions“. The main medication I need is the daily antibiotic I have to take, twice a day, for my issues. Rapture! LOL  and we definitely cannot forget my antidepressants. Without those no one wants to be around me. 😈

After that we went to Walgreens to pick up my new prescriptions and then we went and got some dinner. I was only up for about three hours, but it totally kicked my ass. Today I am running on empty.

Must re-charge

Sadly that is what MS does to us… At least the majority of us. It’s very rare that we can go and do things, and then be able to go and do things the next day. It’s very depressing, especially when you were someone who was always on the go. This disease changes is and takes away everything we once were. That is why we must be stronger than our MS. We must fight it every day, which sucks hairy balls, but that’s what we have to do. And we do it because we are warriors!

                           Have courage and be kind

** I will be back with my positivity journey very soon. So much love to all! ♥️

Surgery, June 10, 2014

****WARNING graphic photos below****

I did not come out of the dark until June 26. Sixteen days of what they call ICU Psychosis. Sixteen days lost to me. To everyone around me I was awake. For me, I was in a dream, not knowing where I was.

Backtrack… The surgery was to help me get some semblance of life back. To be able to go out more and to help those taking care of me. It did not go as planned. All seemed well when they finished and stapled my tummy back together. Sadly they soon knew there was a problem. I’m no doctor so this is in layman’s terms. The stoma was not producing and I was filling up with bacteria. After a week of excruciating pain and testing, of which I have no memory, they realized I needed emergency surgery as my white blood count shot up over night and they new right away I had a serious infection.

Once the un-stapled me they realized they had to stop the colostomy and re-route everything by ileostomy. Sadly the area was highly inflamed and the wound needed to be opened more. So, now, I have a large open stomach wound which will take some months to close.

***GRAPHIC PHOTO***

open wound

At this time I have to have a wound vac done twice a week. Sorry, but it’s fucking painful every time.

After wound vac is placed:

vac

Basically once it’s covered, it vacuums out any type of infection, and helps the wound the slowly close back up. Mostly I’m bummed because I might lose my cute belly button. Kind of sucks. ;-P

At this time it has closed up over 6cm in a short time. My surgeon says I’m the strongest person she has ever met. That even when it got really bad and they the I might go septic, my body fought hard and won.

Honestly, I don’t feel strong right now. The nausea is awful, it’s hard to sleep, and I’m in constant pain… but I will NOT give up now. I’m looking forward to the day they can hook me all back up.

My biggest issue is the anxiety from all of this. It’s a fight not to just break down in tears. But crying makes it hard to breathe and I have to be careful. Sneezing is a bitch as is coughing. But, again, this too shall pass.

I’m thankful to be home. Sadly the second day I got home my house flooded…

Go figure! 😛

Peace