Wednesday, October 15, 2014

Update Doctor Visits and Test

Visited my Gastroenterologist, Dr Schorr Due to severe stomach aches and nausea  and vomiting and diarrhea. He sent me for a Colonoscopy And found 2 precancerous Polyps Which he removed. I also had an Endoscopy And results found No abnormalities.  PRAISE

I started on 3 New meds for very sensitive Stomach, spastic colon or IBS which I knew I had but has worsened.

Saw my Rheumy For my 3 month check up As well as blood work etc.

This week has been much better for my stomach issues.  I think I have found the proper amount which has been a concern to not cause even more issues.  PRAISE

Tuesday, September 2, 2014


Not sure if I had blogged about this or not but I have been having major stomach issues. I was just racking it up to having IBS but after looking back at my journaling I realized a couple weeks ago this is worse than ever and I am down 16+- pounds INVOLUNTARY!  That's unheard of for me!  If I tried to lose 16 pounds it would be warfare. So I have continued to journal because never before has my IBS including disgusting and frustrating.  Just got new insurance from my hubby's new job so I can finally get off Cobra!  Praise The Lord!!!! So I see my Primary Dr tomorrow and will get referrals to Gastronologist from her...praying the test won't be evasive to find out what this is but I'm pretty sure it's not going to be fun.....

 To God be the glory!

Jude 1:25 To the only wise God our Saviour, be glory and majesty, dominion and power, both now and ever. Amen.

Friday, July 18, 2014

Not by the hair of my chinny chin chin....

Saw my Rhuemy Friday the 11th of July. My main issues this trip are my arms hurting tingling and numbing pain at night. Looking back on my blog this was a complaint the first month I was diagnosed.(Oct 2001)  I did see a Neurologist and he said I needed the Carpal Tunnel surgery but no I refuse. Too much surgery already.....  ALSO My hair falling out of my head. It's getting very thin on top.  Weird that it is growing on my forehead and face all eyebrows don't grow but I have hair on my chin...ugh!!!
She told me to increase my Tramodol for the pain and get Biotin for my hair falling out.  I had blood work done and my Urine check.  Bloodwork came back ok. Urine has blood and white cells in it..white cells are 20 and should be 0-5. I don't have any symptoms so she said just let her know if I do.  This makes me nervous but ok....God is in control.

Monday, July 14, 2014

Ready or not...summer is here!

June 17th. Caeleigh age 12 (turning 13, July 2nd), MaKenna age 11 and Rylee age 8 arrive to spend time with us until July 6th. Praying for energy and strength to keep up with them and to show them a great time with great memories for them to look back on long after I'm gone. Today is the 27th. I made a picture slide show of all we've done from swimming at the neighborhood pool to the waterpark, 2 movies, home made crafts, dress up, the vet trip, spending time with great GMA Carlisle and of course meals out like Brusters, IHOP and McDonalds. Caeleighs birthday is coming up and so is the 4 th of July. I've never applied more sunscreen in my life! On the 28th we took the girls to the lake house. Hubby shopped for the meals, got the girls new bathing suits and water shoes and made the meals. I purposely took a back seat and let him. The lemon pepper wings were awesome.  The day was full of sun, lake and I even squeezed in a nap. I drove home so he could get a break.  He needed one.
Regina and Dave and Jason and Becky and boys will be up for a long weekend on the 1st of July.the girls think they are coming the next day.  It was a great surprise and Caeleigh had a nice birthday.  Little Jason and Becky and JJ and Zac came down Friday night till Monday. We also celebrated my sil Matt's 40th birthday. The kids went to fireworks except for Ben and Heather and Matt (Ben hates loud noises). Rick and I stayed home and slept.  All in all we had a great trip, it was tiring, I'm not gonna say it wasn't. And we had some tiring trying days but I think it went as good as it could and I have tons of pics. I'm tanner than I ever remember being.  Not sure when I will ever go to the pool again....ha!!

Thursday, June 19, 2014

Lupus a Rash from the Sun

Since the pool opened me and Heather have been going to the pool with the kids about everyday for 2-3 hours. I have wore 30+SPF, I wear my hat, even in the pool and sit in shade when I am not in water.....The Week of June 16th thru 20th my granddaughters from Florida came up to spend a couple weeks with us. We went to the pool every day and I noticed Tuesday a small red rash on my right ankle.  By Wednesday it was up on my shin and my ankles seemed to be swelled.  On Thursday I decided I needed a break from the sun and by Thursday night it's kinda splotchy and it looks like red dots...where it's possibly healing...Very strange...hopefully it will just heal up and not get worse.  I did ask in a Lupus Facebook page their opinion.  It was same as mine pretty much.  Lupus rash from sun...ugh!!!! So hard not to go to pool.  But I will be vidulent about continuing to use 30+ On sunscreen, wear my hat and sit in shade when I am not in pool and try to avoid the heat of the day. I sure don't want it on my face..or anywhere for that matter....

Needed to update blog.  That's all I've got.

Thursday, May 29, 2014

Welcome summer

So I started on a new med. I took the 4th dose of the Methodextrate I woke up in the night vomiting. Saturday felt bad all day. Was better Sunday morning. Went to church. Ate at Philly cheese steak, felt fine got home. Started diarrhea and doctor Monday. She said stop taking the Metho.  She said to wait a week or 2 to get it out of my system and come see her...another $50 copay to try another medicine....I have a bag full of old meds....ugh!!!

So I waited 2 weeks and saw my Rheumy again and now I am on Leflunomide. I have been on it 2 weeks now and no side effects so far.

I had had more good days then bad since then and my knee that I am almost 1 year out of surgery is finally proving that it indeed is getting better...FINALLY!!! I am going up stairs one leg at time.  Still coming down one at a time due to other knee pain but I am dealing with it.

The pool is open now so I hope to be doing 3 to 4 or more days water aerobics on my noodle. Really helps knee pain.

It's almost June.  Welcome summer!!

Tuesday, April 1, 2014

9 Months out and Camping Trip

I'm sitting here after returning from a 5 day camping trip with my right upper arm muscle aching. It reminds me of the days 3 years ago when I was sitting by my moms death bed..I would ache so much and just couldn't figure out why...this was before my diagnoses of Lupus and Fybromylgia and Arthritis.
..let me start with the camping trip.

Thursday the 28 th my hubby and I left for our annual his birthday camping trip.  Over the years it's went from just us two, to the family reunion, and back to just us two.

Anyway we were looking forward to our trip because we have only been on one trip since I had my knee surgery.  It was a hard trip due to the stairs....this trip to my shock and surprise was the same or worse than that one.  I am 9 months out from knee replacement. I was pushed to my limits from joint pain in both knees, hips, shoulders and near depression by end of trip...don't get me wrong. I had a good time with my hubby.  We took our dogs and they kept us entertained.  But the stairs, getting out of chairs, picnic table, low toilet........NIGHTMARE.

I'm taking the following meds:

Methotrexate 2.5  8 pills once a week

Folic Acid 1 mg. once day

Cymbalta 1 x day. 60mg

Plaquenil 200 mg  1 /2x'day Lupus

Tramadol 50 mg. as needed for pain

Clonazepam 1 mg at night to sleep

Flexeril  10 mg 2 xs a day

Hyzaar 12.5 mg 1xday BP

Baby aspirin 81 mg nightly.

My question is how and why am I still hurting?  I am limited to the point where I can't live a normal life...certainly not a minimal active life...I have to limit myself or I am in bed...very depressing....Sooooo I am not scheduled to go to Rheumotologist until May
and my Orthopedic Dr until June...

Monday, March 17, 2014

Chemo for Lupus

My Rheumatologist started me on methotrexate on Friday.3/14/14  it's a Chemo drug.  I have heard of using chemo for Lupus but I never thought it would be me...then again who ever thinks or knows what God has in store? I take 8 pills every Friday and amino acid every day for a minimum of 8 weeks.  I am very apprehensive about taking it but so far so good.  I am on day 3. This is suppose to make my joint pain from the Lupus more tolerable. Believe me I'm weighing my pros and cons.

Our Music Minister and the band at our church had made a CD and the roll our for #madealive was last night.  I almost didn't go but want to keep my commitment to the choir as much as I can during all this.  I love singing praises to our Lord.  I love our church and especially our choir.  Thank you Justin, Brandon and Hannah for last night.  For the wonderful talents that were shared and for empowering me through the music and The Word. I was pumped when I left.  My daughter and granddaughter Loved it too. So great to have gone to church concerned for my health and left knowing God is in control and everything will be ok....

Phil. 4: 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

Monday, March 3, 2014

A Great Pyrenees to a not so " great pair of knees"

                                      A Great Pyrenees to a not so " great pair of knees."

February started with a big snow, followed by Valentines Day and a new addition to our family.  Zoey our Great Pyrenees was born December18th and we got her on February 15th.
She's cute, silly and adjusting from being born in a barn and knowing no other life than a litter of 8 and her mommy.  We also saw her daddy when we picked her up.  Both huge 100+ pounds Great Pyrenees.  Daddy's name was Bandit and mommy was Lilly.

So now we have two dogs which really keeps me busy.  Potty training, keeping her clean and trying to spread the attention to Marley as well.  It's better to be busy than sedentary so they keep me hopping.  Today she is 10 weeks old and we have had her 2 weeks.  

My challenge being an OCD person with Lupus and Fibro is keeping my house clean and potty training and caring for 2 large dogs.  Can't wait for weather to get nicer.  We can't start training Zoey on the electric fence until she is 4 months old but she has came a long way in 2 weeks. She's doing all the puppy things.running, jumping, playing, digging and pestering Marley.  Persistence and consistency is the name of the game.

Vet visit today. She weighs 13.3 pounds. She was right at 7 pounds when we got her. Vet said she'll double her weight in a month. 

Unfortunately My Lupus is in a flair now. Not sure if it's because of my activity or what but had to start back on Prednesone this week due to pain in both knees, both hip joints, left shoulder and left thumb.

Pain is better although my left knee keeps giving me fits....Praying that it does not take the same route my right knee took.

Just a small update, thanks for reading!

Be thou faithful unto death, and I will give thee a crown of life.  Rev. 2:10

Monday, February 3, 2014

Your friend has lupus. You can see she's in pain and you say, "Are you OK?"

She says: "I'm fine."

Why is she lying to you? Why is she minimizing what's going on? Doesn't she trust you?

I know why I do it. I asked on social media, and found that a number of other lupies have similar reasons to mine.

We do it for ourselves, because:
we don't want to always be talking about lupus. It never goes away, but we still want to try to stop it from taking over our entire lives.
sometimes it actually feels worse when we acknowledge it.
we just want to do and say "normal" things.
because if we start to talk about it maybe we'll just never stop and we'll be talking about pain, fatigue, memory loss, confusion, rashes, fear, drugs and all the rest of it forever.
because sometimes what's happening is something that we really can only talk about with someone who's been there (which is where lupus support groups are amazing.)
because sometimes we feel like being with someone and not talking about lupus is the only time we wake up from the nightmare that we're living in.
as one lovely lupie said in answer to my question; "I am afraid I will become lupus."
because if we admit we're in agony, you will say "well, let's go home", when what we really desperately want and need to do is stay out and have a little bit of fun (and yes, we know we'll pay for it later, sometimes it's worth the cost.)
we don't want to draw attention to ourselves.
we don't want to be the person who's always complaining.

We do it for you because:
we feel like all we ever do is complain to you. Sometimes, we want to be there for you, not have our friends and family feel like they always have to be our carers.
it's bad enough that we feel bad, making you feel bad about it won't make it any better.
because we're just so sick and tired of lupus that we're sure you must be too.

We do it to avoid (I have to stress, that I don't have much of this at all - very few people have judged me badly simply for being sick, I'm working on other lupies' experiences here):
being labelled as a hypochondriac, or told we're faking it.
being rejected.
being condemned by people who just can't understand how we can be well one day and horribly sick the next.
losing friends and being abandoned.
getting stuck in the "but it's not like it's anything serious like cancer, get over it" conversations that leave us trying to explain/justify having a chronic, life-threatening, incurable disease.
unsolicited, uninformed, and incredibly unhelpful advice.
people not believing in the symptoms they can't see.

When we say: "I'm fine" or "I'm OK", it usually means something like "I don't want how I'm feeling to be an issue right now, let's talk about something else." 

Thursday, January 9, 2014

Catch up

Catch up time!

We had a wonderful Thanksgiving Day weekend all our kids and 12 of our 13 grandchildren. I love family time! Everyone got to see our "new house".
I am still enjoying the house being renovated! It's so much easier to clean with the wood floors vs the carpet.  Love it!

It's now been 7 months since my knee replacement.  My knee is still stiff especially when I first stand up or leave it in one position for a long time.  Getting out and in Ricks truck causes frequent outburst of screaming as it really hurts!!  I saw my Orthopedic Dr last week, Dr. smith.  I was worried what he was going to say because I had nothing positive to tell him....I felt like my surgery was unsuccessful....but when I told him, he said I am slow to heal because of the Lupus and it could take a year or even 2 years to totally heal...really?!?!?   He said I will be surprised one day will go by and I won't even think about my knee then 2 days and 3 days...I can't wait because right now it is everyday several times a day.  But I was stoked to hear him talk to me in a positive manner.  It lifted my spirits because I had been so down about the pain still being there.

I saw my Rheumotologist .  I still have the hip and shoulder joint pain as well as my hands and of course knees and I don't have a lot of energy but I guess that is just how it will be....she put me back on Cellcept because of skin sores. They aren't real bad but we don't want them to get bad.

I have been riding 2 miles a day 5 days a week on my stationary bike. My knee gets warmed up it works better. I am still on Tramodol for pain which also covers my Lupus and Fibro pain as well.  Most of the time it's enough.

Rick is still healing from his broken pelvis.  It's much better but physical work makes it sore so he has to pace himself. He was able to get some hunting it the last month of hunting season.

We had a quiet Christmas this year but we expected that to be the case.

God blessed us with some unexpected money so I could get a vehicle without a car payment.  It's a Mitsubishi Montero sport.  It's older but I love it regardless and especially no monthly payment.

I am hoping to get back in choir soon.  My biggest challenge is standing for long periods of time.  I also hope to get on our widows ministry team where we reach out to widows in our church. My moms church did not have this and it would of been a blessing if they had not only for her but for me too.

More to come....both hands and fingers are numb..I can hardly feel them as I type....