Tuesday, September 30, 2008

Hospice Update

Hi everyone,

Thought I'd just give you an update on my situation. I am still at the inpatient hospice facility. I perked up a lot after the first few days then I started a backwards slide. I have been having night sweats and last night I almost felt delirious. My temperature was normal at that time but it now stands at 100.2. So, I've caught something.

We have figured out a lot so far. I was on 2L of oxygen but on Sunday I had the bright idea to bring along a portable pulse oximeter (measures the oxygen levels in you blood stream on a walk outside). Bill, the kids, my brother Mark and his wife Cindy all set out for the slowest walk ever. We noticed quickly that my saturation levels fell to the low 80s very quickly. Tricky Bill increased my oxygen from 2L to 4L and, lo and behold, my oxygenation increased to the low 90s. So now we know I need 4L on exertion. I can take the walks (about .2 miles). They are exhausting, but I need to do them so my joints won't ache so much and to counteract the tightening of the skin in my legs.

It almost seems like I am going through the first few years of the disease all over again: the itchy skin, joint pain, night sweats, etc all bothered me during the early years but resolved. And, now, they are back full force.

We are still messing with the cardiac medications so that we can get me to a more normal resting heart rate. The Fentanyl PCA pump (24 hours of continuous Fentanyl with a patient bolus allowed every 15 minutes) is helping with the cough. So we are making progress. Hopefully the fever will be short lived.

Bill tells me I have had lots of typos lately. I tried to fix the last two post, but I have the excuse of being doped up at all times.



Jean said...

Thank you for the update. It is nice to know exactly where you are at "today"....

May God continue to give you just enough grace and strength to do one day at a time. Continuing praying for you!

Linda Crispell said...

I am so sorry for the setback. I have always been impressed with your beautiful writing, you get a pass for an occasional typo.

Annie said...

eh. typos schmypos. we all do them. even the best of writers.

i'm happy that you're able to go for walks with your family. i hope it brings you a peace of mind.

and thank you for your comments in regards to my loss. i appreciated that.

always in my thoughts.


desert dirt diva said...

yes thanks for letting us know how you are...Your blog is one of the ones i read daily, and glad to do so .. since i ran accross it a month or so ago.....and as for typos, who cares, sometimes my blog is one big typo, as long as you can write...write how ya won't , we will not mind i promise...

Bird Spot said...

If your blog ever DOES turn into a book, the typos can be fixed then. :)

CathyB said...

i'm with BirdSpot. i'd love to see your blog turned into a book. i myownself make my living typing medical reports dictated by some of the most unintelligible dictators on the planet, and my job pretty much depends on my accurate transcription skills. we are held at a 98% accuracy requirement (and i just have to brag a little- i got a 100% accuracy on my evaluation!). SO.. once I change gears from *work* typing to *personal* typing, my fingers are very tired, and i'm afraid the typos just appear out of nowhere. i usually see them, but i'm too weary to change them. i have arthritis in my pinky fingers, so it hurts to press the shift key. thus the reason for most of my lack of capitalizing *i* and capping the beginning of my sentences. and i'm not even wearing a fentanyl patch!!! you have my utmost adoration, and i am in awe that you have energy to post at all. don't worry. we know what you mean. little typo here and a little typo there keeps us on our toes. just keep typing as long as you are able. i'm glad you have *friends in low places* (a doctor for a hubby) who can participate in your care, and who wasn't afraid to adjust the o2 level. yipee!! enjoy the outdoors. take care!

Ana's World said...

Glad you got the pulse ox/oxygen ratio going for your walks. Take care. I pray for you every day! Ana

Persnickety Ticker said...

Just glad to hear from you. Hope you get to feeling a little better.

Will keep you in my thoughts.

Evelyn said...

Dear Michelle,
I have been reading your postings daily for the past three months.

Your amazing teachings of love, courage and strength have touched my heart, they will long be remembered, what beautiful gifts to leave the universe with.

Please know I won't forget you, I keep a candle ignited in my heart for you and wish you a peaceful journey.

God bless you now and always.

Mike Testa said...

Very touching post. You seem like a touch lady...I mean that in a good way.


Anonymous said...

Typos are ignored in the online scleroderma community. You should see the chats! It's a wonder we can figure out the conversation from one minute to the next! Drugs are a great excuse as well as stiff/curled fingers. Hope you're having a warm and comfortable day.

Jeanne said...

I'm so glad you can take your walks. I'm sure doing anything the slightest bit "normal" is fun!

Who cares about typos anyway?? NOT ME!! (LOL)


Carl said...

I am sending your positive thoughts! Hope you feel better Michelle

Julieann said...

I never notice any typos...LOL:)

So glad to hear an update!

(((Prayers and Gentle Hugs)))


Ellen said...


***sending lots of love and hugs and healing energy to you right now***

I am honored and humbled that you have been willing to share this journey with the rest of us.

From one writer to another, your words are among the most beautiful I have ever read. You are an amazing talent!

As someone who is preparing to lose a loved one to another "greedy" disease, your honesty and candor have helped me understand how to be a better travel buddy for someone who is on a similar path. I thank you for that.

I'm praying for your continued progress so that you can get home to be with your family.

Sending you love from MN