Quick update

Just needed to add a update.
Thanksgiving was great. I missed Bill, Kelly, Kendall and Landon. Went to my sister Paula's house. Food and company was great! BUT I think I overloaded on carbs. I started shaking more (hands) after eating. I flushed my body with drinking water. I got better. I had to take one of my Flexeril that night and slept and relaxed like a baby.
This week will be exciting. I go to Columbus on Thursday to watch Xavier after his surgery. He was born with an extra thumb and he is having it removed. Poor boy, that is the "thumbs" he sucks. Should be an interesting time. He will have a cast on that goes up over his elbow!!!!! 16months and a cast! And no thumb sucking! OH MY! Any prayers will be appreciated. I will fill you in later.
Plus my nephew that I haven't seen in years is coming to Columbus for work and we are all getting together. WOW! Can't wait to see you Stephen.
The week of the 8th will be interesting too. I go back to Job and Family Services and then on Friday the 13th I have my 3rd infusion and doctor appt. Pray for nice travel weather that day. Thank you.

I have learned about two new places to call for help. One, my friend Jane told me about and the other my niece Tara told me about. I will update you about that after I call them. Anything I can pass on to help anyone else, I will.
My face  and stomach are still large and in charge. I might have to look into "Lifttime Lift" when all is said and done if I don't loose the under chin/neck fat. My glasses have stretched out. My face is puffy but firm!  I still have my hair.
A couple of symptoms I don't think I have passed on to add to my list. My sense of smell is ok, but I think I smell like :metal." Maribeth says I don't. No fever, but gland/throat hurt. Nothing bad, probably from extra fat/swelling.

One more thing. I need to exercise to keep my muscles in check. I hooked up my bike to this apparatuses that lets my ride my bike in the house like an exercise bike. I can't do 5 min. yet, but I have to start someplace. LOL. Thank you Janet for letting my use it. :))))

 

Food Stamps and Cleaning

I wake up in the morning feeling like P Diddy..........

Not really!

Haven't written in a while. Tried to last week. Thought I had saved what I had written last week to go back to it later in the day. Didn't save. :p  So I gave up.

 

I've been crocheting a lot lately. I go through fazes  of wanting to and not wanting to. Plus my face is so puffy but firm and under my chin.....well you can't see my neck anymore. I think for Thanksgiving I will tease my hair up really high and wear a smoky eye. Maybe that will draw attention away from my moon face. LOL

 

Well I went to Job and Family Services on the 18th. Now that was a trip! So glad I wore my mask. I am a people watcher and boy did I get an eye full. Yes, I know, everyone a has a story. The cigarette smell got me as soon as I walked in the door. Anyway, I got my foodstamp card the other day with Nov. and Dec. balance on it. Budget, budget, budget. It covers food  and anything I can plant for food. No in store food you can eat there or precooked food from store. NO PAPER products!!!!! NO TOILET PAPER!!! Really!! Went from Cottonelle to what ever! Not so bad. Any favorites out there?? I still have to go back. Not sure if I can get disability because I may only be off work for 6 months. Disability is 12 months. My doctor told me 6 months NO longer than one year on infusions. Depends on how it works on me. I hope they take that into consideration. How do people do it???? I don't want to be off work and I want to go back to a job I can do as soon as possible. Doesn't that mean anything????? I also have to check on paying for medication. $$$ My bill's at Akron (SUMA) Hospital are being looked into and I appreciate that. Enough about that...

 

I have been cleaning a lot. Sorting and throwing out. What I use to do in a part of a day or day, it takes a week!!! BUT.......I have the time! Shortness of breath is still a bitch.

                  HAPPY THANKSGIVING!

 

 

 





Second infusion DONE!

11/12/13 Second infusion in and done.
Of course the day we had to drive to Akron, it snowed for the first time. Really it wasn't that bad. It's Ohio, so we had a little snow then a little sun, all the way to Akron. Out my huge window at The Cooper Cancer Center we could watch while I was getting my gogo juice.
Well, I gained about 9 lbs. All in my face and upper abdomen. they have a life of there own. LOL Not really worried about it. I know it is the Prednisone and it will eventually go away.....  Same routine today. Received Tylenol, Zofran, and Cytoxan along with a bag of vodka---I mean dextrose. No problems, just was EXTRA tired after infusion. It was hard to keep my eyes open. Thank you Tara and Maribeth for sitting with me and making the time pass faster.

After infusion I went to see my favorite Doctor. Dr. Anderson. He is the nicest, smartest doctor around. While talking to him, he could tell I was buzzed from the Prednisone. lol  He is decreasing my Prednisone by 20mgs a day. YEAH! Hopefully by mid Feb. I will be off Prednisone. I will still continue Cytoxan infusions for the full 6 months maybe longer. BUT no longer than one year. Then hopefully I will be in remission. All my symptoms are caused by Prednisone. With decrease in dose it should be interesting to see how that changes. Diet is good. Spoke with dietitian. Glucose up, but that is probably from Prednisone. Plus, I might try tofu and chia seeds! Even though I was told for 3 years not to eat wheat, nuts, beans, (fiber) because of my kidneys, NOW they tell me that's what I should be eating.

I can't get a Free Wig. :(  Since I don't have cancer, they can't give me one. That's ok. I haven't lost my hair yet and it hasn't started to thin either. Doctor said I may not.
My next infusion in Friday Dec 13.
On our way home, MB and I stopped at my moms. Bill and Kendall stopped by on there way home. Of course my mom had another laundry basket, plus of food and goodies. Thank you!
Also Thank you Tara for the bag full of yarn, heart pin, baby oil gel and yummy cookies.

The last picture below is my exercise for now. Need to move the fluids inside. Yes that is my mom's shake weight. She finally got someone to take it home. I do it when no one is around!

Hugs to all and thanks for reading.

Goodbye Little One

Not that I'm feeling BLUE, just felt like using another color ink.

My face is getting puffier and puffier. My upper abdomen is still large and in charge. Whoozy feeling in head at times. ????? BP is staying okay. Pulse good. Still funky jabbing back pains AND "The HOT Flashes" continue.

Enough about me... lol

I found out yesterday that one of the little (preteen) girls that I took care of passed away! Dear Annabelle could only communicate with laughter. She had MANY disabilities. I remember kissing her before I left and telling her to behave. As we know, she lived much longer than she probably would have if she hadn't have been adopted by the family I worked for.  She was a joy! Not sure of details, but that doesn't matter. I was able to take care of her and enjoy her life with her. <3
In bed early tonight. Can't concentrate on crochet pattern.....
Will be making a trip to Mennards to get pipes for under bathroom sink! Drain was running slow. Tried plunger, than Draino stuff.... Nothing. Used my snake. Went through, but not just drain BUT pipe!!!! Water all over BR floor. I have done change in kitchen (kinda) so should be able to do with Maribeth's help. UGH!

The National Kidney Foundation: News

The National Kidney Foundation: News

It's been a few days......I've been crocheting and chilling. Energy level low. Eyes funky. Probably from puffiness. Upper abdomen still distended , another 4 inches!  If you click on post above from NKF, I think it might explain the abdomen situation! On list to ask doctor next week. I've gained about 7lbs. but feel more like 20lbs. !!! Shortness of breath is a BITCH!!!

Finally planted garlic bulbs the other day. Cleaned up outside a little. (With Maribeth's help) Left my swing set up so when its nice I can still go out and swing.

This is just because I want to document. When I was first dx. with an autoimmune disease about 3 years ago, I was told I had C.R.E.S.T. Syndrome. It is an acronym. Each letter is a symptom. I had many. BUT, it is not the main diagnosis, because I was having other symptoms that were being, kind of, pushed to the side.
After getting worse and having more and more problems. (Sinus, breathing, stabbing back jabs) When my niece (who is a dialysis nurse in Akron) spoke to one of the doctors she deals with, I decided to get a second opinion. THANK GOD I did. Eventually someone would have sent me to a pulmonologist, but it might have been later than sooner. Not good for recovery. : p
SO, I kind of was waiting 3 years for my kidney's to fail and to go on dialysis. There are 5 levels of kidney failure. I started out in Level 4, Level 5 is dialysis. Waiting plays a game with your head! I'm not a good waiter......

Paperwork

 

Yesterday was a busy day. Went to get blood drawn for next doctor appt and infusion in th e morning. Had Maribeth's car because mine isn't insured right now.$$$ Saving money. Then I went to JoAnn's (0f course), Target and Meijer. Also finally went to Job and Family Services to apply for "assistance". Interesting place. Everything is "hurry up and wait."

Today we didn't have internet till 2:30pm because of wind storms last night. Feeling kind of funky today. Looked at myself in the mirror and I am growing jowls!!! I could tell my face was getting bigger along with my stomach. Having some stabbing jabs in back and tightness in upper back. Normal for me, just more today. Still have my hair and headache though. My BP goes up at times and I'm not sleeping very well. Once I get to sleep, I sleep. Just not for 10-14 hours at a time any more!!!! Watching toooo much TV.

Just got a GREAT call from one of the boys at the home where I worked. Made me SMILE!!!! :)))) Thanks for the call Zack (via Roxanna)