Not well

I just don't know what to do with myself......
My tongue hurts. My back is so heavy, it hurts to walk. My vision is so blurry and my eyelid so heavy, I can't keep them open long. My thoughts are slow. I have periodic stabbing pain in my sides. My bowels still have a mind of their own. My face is still as large as the moon. I can't see my neck. Having the extra neck is weird. Can't look down. My glands in my neck ache. This goes up to my ears. Ears not in pain, just ache.
I want to do so much (really anything) and can't.

When I saw the doctor last Friday, he asked if I felt better...........I really don't. YET!

I just want the back bedroom cleaned out and organized.

Oh My Tongue!

Yesterday was my third Cytoxan infusion. Since I am sooo swollen (edematous) they only gave me half the bag of fluid. Got my antinausea bag (Zofran) and full bag of Cytoxan. I felt about 25% better after infusion. Shortness of breath was a little better. Thank you Maribeth for taking me again. I LOVE YOU! I also had the nurse I had the first time, Elise. She is so nice and informative. I will get a picture next time. We were a little late for my doctors appt. but got in without problem. Dr. Anderson changed a few things. Because my BP and pulse are up, my puffiness is out of control, my bowels have a mind of there own, I am slowing down..... He is slowly taking me off Prednisone. Should be off by next visit. I will be taking Lasix (water pill) every day. YeaH!!!!! BUT.............. now my tongue is hurting. It has hurt in the past, but went away. This woke me up. Not really a sore throat. I think more glandular because of edema. It's more the back of my tongue that is sore. If this continues, the weight should come off fast... LOL!  Also my blood work was ok. No big change. I was afraid it was off because I had some bruising.
On a good point, MB and I went to see Landon last night. Kendall was at her grandma's :(  We took Landon to see the lights at the Fairgrounds. He LOVED it. I LOVE him!
FYI- no Christmas tree up yet. Maybe Monday????

Every Day I'm Shuffling: Blah!

Every Day I'm Shuffling: Blah!: Not sure how I'm feeling the last couple of days. Last week was a big week. Xavier had his surgery and is doing Great! He has a cast on ...

Blah!

Not sure how I'm feeling the last couple of days. Last week was a big week. Xavier had his surgery and is doing Great! He has a cast on and had to have pins put in his thumb, but he is doing wonderful. Three more weeks and the cast is off. :) I was in C-bus for 4 days. Any other time it would have been a breeze. This time it was good, but it caught up with me...... DAMN!!!!! On Saturday I got to see my nephew Stephen I haven't seen in about 10 years!!!!!! What a nice visit we had. I hope we didn't overwhelm him too much! Thank you Paula and Brad for hosting all of us AGAIN!!! Hugs! I also got my hair cut short. The texture has changed, but it hasn't fallen out.(yet?)

I have my third infusion tomorrow. Not sure if I'm feeling yucky because it's time for next infusion or something else. Plus my body is aching MORE! Not fun. Thinking it might be the 20mg I decreased my Prednisone has caught up with me?? Back tightness (SOB), upper abdomen heaviness increase and lower back heaviness increased. Ambulation hurts. My moon face (head) is heavy and hard to hold up at times. Eye lids heavy. Still smell metal smell, bowels are crazy, BP and pulse going up and down. I've noticed some bruising (bld count?) Always tired.
REMEMBER - I am writing all this down to hopefully help someone else, not for pity. I have accepted all of this and will continue to accept whatever my doctor gives me to get better.

I have received food stamps and my cupboards are full. Thank you gma and Brad for paper products. I don't have to use t-shirts to wipe my behind!!! LOL! I saw another case worker on Tues.at Job and Family Services. She was wonderful and is going to try to expedite my case so I can get some cash to pay bills. It's up to the doctors in Columbus when they review my case. Please say a prayer! It could be two weeks or 6-12months before I get any money!!!!

AMEN :)

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)

Random Thoughts Today

One of my favorite TV shows was "Monk." I even bought a Monk bobblehead!
One thing he always said about his "condition" was that "It is a Blessing and a Curse." That's the way I see my condition. It has been a blessing the last 3 years that no one could really tell I was not well. Everything was happening on my inside. The Curse was, NO one could tell I wasn't feeling well. I worked and slept. That has been my life for the last 2 years. This last year was the worst. But having Great children and 3 Beautiful Grand Children, everyday is a Blessing and what keeps me going.

Now let me talk to you about "HOT FLASHES." Menopause has come and gone. Had some hot flashes. Took medication for a short while and stopped. Hot flashes decreased. NOW, every evening I have a power surge that explodes in me. Starts with funny feeling in head and then whoooosh! I'm happy it is happening in the winter. It would be a lot worse in the summer! :p
Don't know if this increase is because of infusion, I will ask doctor.

Next on my list to talk about, my abdomen. Area above navel. Oh my! I will have to keep track of how and when this happens. It gets sooo large and firm. I measured it today but will not share that. lol  It will go down in a few days. No I am not constipated. haha

Enough for now.
Peace out. 

This is me getting my first infusion of Cytoxan on Oct. 15 in Akron. It was a long day. Couldn't sleep the night before. My sister Janet took me and entertained me. She even brought me toast! They have a FULL kitchen with all kinds of goodies. I didn't get nauseated. They gave me anti nausea med before starting. I was prepared with "puke bag" just in case.

My last night to work was Oct.5 2013. Almost one month off work. Still going strong. This is the last of my 10-14 days of being more susceptible from the med. So far so good. Went to church on Sunday and wore my mask. Maribeth is selling crochet stuff at a craft show this weekend, so I am busy crocheting some things for her to sell. $$$$$ I haven't started getting any disability yet. It could be 3-4 months!!!$$$  Finding out about how people survive on disability!!!! It's interesting. Never thought I would be going through this. But I will make it!

I miss seeing my girls that I took care of at work. I hope they stay healthy this winter.

 

FEELING:

Ever since I started my infusion I have a very slight headache right above my eyes. Continue to have lower back heaviness and upper back tightening. Also, since I am on a high dose of Prednisone my appetite has changed. Plus my stomach has increased in size. I think I am having another "Alien Baby". (Had one once before when I had my gall bladder out about 6 years ago!) These are things I can deal with. I haven't lost any hair yet. Can't remember if I said that I can get a FREE wig. I'm thinking RED.

Enough for today...

Peace out  

I have been dealing with some type of autoimmune disease for the last 3 years. First dx set me on the way that my kidneys were failing. So every 3 months for the last 3 years I have seen a Mansfield kidney doctor and getting blood work to see if I was ready for dialysis. Always staying in Level 4 where Level 5 is dialysis. Not a way to live a life......Plus during this time I was ALWAYS having sinus problems that included my eyes, ears and dry mouth! Always on antibiotics!!!!! FINALLY my "lovely" niece Tara, who is a dialysis nurse in Akron, said.......SOMETHING has to be done. She spoke with a kidney doctor that she loves in Akron. I saw him this summer. Fell in love too. This lead to my second kidney biopsy and a dx from previous post. FINALLY a dx with a treatment. YEAH!!!!
I will be getting an IV infusion once a month for the next 6 months in Akron of Cytoxan. (It is a cancer drug that works for this dx) Because this medication can decrease my white blood count, I have to be off work. No nursing for me for at least 6 months. First infusion was Oct.15. All went well. No nausea. I still have my hair. I may lose or just may just thin. I'm hoping I lose it! Crazy, I know.
So I am home 24-7 with Maribeth's help. Along with Penny (the dog) It is going to be a long winter!!! I hope I don't turn into Jack Nickolson in "The Shining!"
PLUS I told the doctor NOTHING is going to keep me away from my grand children. I will mask up and did yesterday for Kendall and Landon's baptism!
I need to THANK ALL MY FAMILY who have been sooooo supportive during this period of my life. I LOVE you ALL!!!!

MY LIFE SO FAR........

I have decided to start a blog during my time off work to pass the time and also keep everyone updated on why I'm off work. You can follow if you want. No biggie. I just needed a place to write how I'm feeling and not post everything on Facebook or remember to include people in e-mails!!!

My diagnosis: (incase you want to know lol)

Granulomatosis with polyangiitis (Wegener's) (GPA)

What is Granulomatosis with polyangiitis (Wegener's) (GPA)?
Granulomatosis with polyangiitis (Wegener's) (GPA) is a rare form of vasculitis mainly involving small and medium-sized blood vessels. The disease can affect most parts of the body. It commonly affects the sinuses, nose, throat, lungs, ears, eyes, kidneys, skin, joints, brain and other parts of the nervous system. Not every one with GPA is affected in the same way. Some patients have mild disease, while others may have severe damage to these organs which can be life-threatening.
Who gets granulomatosis with polyangiitis (Wegener's) (GPA)?
Granulomatosis with polyangiitis (Wegener's) (GPA) occurs in both men and women and can affect children and adults. Although Caucasians are affected more often, people all over the world can get GPA.
What causes granulomatosis with polyangiitis (Wegener's) (GPA)?
Wegener's granulomatosis is thought to be an auto-immune disease for which there is no known cause.
How is granulomatosis with polyangiitis (Wegener's) (GPA) diagnosed?
The diagnosis of GPA is made by combining clinical features with laboratory tests (including tests for ANCA) and biopsy of affected tissues.
What is the treatment for granulomatosis with polyangiitis (Wegener's) (GPA)?
Treatment of GPA usually includes a combination of glucocorticoids and an immunosuppressive drug such as cyclophosphamide, methotrexate, or azathioprine. If diagnosed promptly, treatment can bring about early remission and prevent organ failure. It is a chronic disease, and although remission of symptoms is usually achieved, the relapse rate remains high.
What is "granulomatosis with polyangiitis?"
Granulomatosis with polyangiitis (GPA) is a new term introduced to replace the name Wegener’s granulomatosis. As the term is being adopted, the terminology “granulomatosis with polyangiitis (Wegener’s)” has been proposed.
Polyangiitis (Churg-Strauss). Antinuclear antibody (ANA) is a blood test most often elevated in patients with systemic lupus erythematosus (“lupus”), Sjogren syndrome, scleroderma, and other types of autoimmune diseases.