Tuesday, October 11, 2016

Ultra Sound Results

   My blood work showed that with me being off the NSAID medications for a month my Kidney function went up 10%.  Which is great.  I now have 62% kidney function which is still Chronic Kidney Disease, Stage 2.  BUT that is good news !  He was not sure it would improve at all.  I do still have blood in my urine so we are going ahead with the procedure where they take a camera in and look at where it is coming from (Nov. 2nd).  The Dr also feels very sure my pain in my right side is Arthritis. Well I am thankful for Arthritis because that is much better than the other diagnoses it could be!  So I have to be on pain medication that will not hurt my kidneys or liver but will help me tolerate the pain.

Following up with my Liver Dr on October 27th but from what they told me on the phone it appears I have a fatty liver at worst so I am expecting good news there.

Tuesday, September 6, 2016

A New Avenue on this Lupus Journey

What a crazy week!!!  August 29th I ended up in the Emergency Room.  I started out at my PC Dr because I had been having severe groin pain in lower right side all weekend. (Front and back)  I had convinced myself I had a hernia...When my Dr examined me (mostly talked to me) she said she thought I had Appendicitis... She tried to get me into Radiology at the hospital to get a CTScan but because my Insurance is an HMO she soon realized that was not going to happen quick so she called me and told me to go to the ER because she was worried it would bust..... So I went to Clearview Medical Center.  (Never go to the ER unless you are transported in an ambulance. I drove myself and sat in the waiting room for 4 hours and 20 minutes!!!! ) FINALLY when I saw the Dr. He thought I had a kidney stone! (I knew I didn't!  I had one before and I would not of sat in the waiting room I would of been crawling the walls!) ANYWAY!!! He had me get the CAT-SCAN which would show if it was a hernia? Appendix? Or a Kidney Stone?? Well it was none of the above!!!!  It showed my Kidneys had abnormal function.  He said there was clutter in there and the kidneys were not doing their job cleaning my urine? Blood?  Not sure.  There was blood in my urine and white cells. He handed me a paper and ask me if I was familiar with Lupus Nephritis?  I had heard of it but since I have Lupus SLE I was not sure...Then I put it together.  Lupus was attacking my kidneys...A nightmare I have dreaded...Not this!! I really had convinced myself this would not be me!  ANYWAY he referred me to a Urologist.  I saw the Urologist today.  Dr Roosevelt Allen with Georgia Urology.  He wants to do a test where they take a camera and go into the Kidney and see why I have blood in my urine.  This has been scheduled for November 2, 2016 and he said that is really all he could do. He wants me to go see a Nephrologist at The Kidney Hypertension Clinic next Tuesday morning and see Dr. Kirti Shah.  They will figure out why I am having the pain and why my kidneys aren't cleaning out the waste products....There are 5 stages of Lupus Nephritis.  Praying I am not higher than a level 2....

This story will continue as I go down a new Avenue of this Lupus Journey.  Thank you for your prayers.

Psalm 121
1 I lift up my eyes to the hills-
    where does my help come from?
2 My help comes from the Lord,
    the Maker of heaven and earth.
3 He will not let your foot slip—
    he who watches over you will not slumber;
4 indeed, he who watches over Israel
    will neither slumber nor sleep.
5 The Lord watches over you—
    the Lord is your shade at your right hand;
6 the sun will not harm you by day,
    nor the moon by night.
7 The Lord will keep you from all harm—
    he will watch over your life;
8 the Lord will watch over your coming and going
    both now and forevermore.

P.S. When we get this figured out I will then pursue the next issue.  My Liver is also not functioning correctly according to the blood work.  I have the referral but can only handle one organ at a time... Weight Watcher Update -39 pounds

Thursday, August 25, 2016

Water Aerobics vs 80's Jazzercise

So along with my Weight Watchers (-37 pounds) I decided to join a gym and keep doing water aerobics through the fall after our neighborhood pool closes and hopefully get on the machines and try some other classes.... Well I guess my brain forgot I am 61, and that I have Lupus and Fibromyalgia because the day after the first water aerobics class I was so sore I could not even turn my head without yelling out in pain.  I was miserable. Had to use a gel for my muscles and had trouble sleeping...  It lasted 2 days and I was ok so I went to my next class and could feel a good work out when I was using the weights (styrofoam shaped like weights that you have to keep under the water through a series of arm exercises) I did it,  I enjoyed it and it was fun. One hour of non-stop drill sergeant type, let's go exercises.  The next day (yesterday) I was miserable.  Had to alternate Tylenol and Advil, cooling gel, heating pad..miserable...Today still miserable.  Thought maybe I had pulled a muscle or it was something else. Surely 2 water aerobic classes couldn't put me down like this! I mean I was the Jazzercise Queen back in 82'!!  Well Doc says I probably went about it a little hard, should of eased my way into it. I caused a Fibromyalgia Flare Up.  She put me on muscle relaxers and alternating heat and ice.  She said try to work my way through the classes as best I can.  It's possible that I can get to the point that this will not happen.  So that is the plan.  Hate that I had to miss today but good thing I went to Dr.  Because had I not I probably would be in the bed!

ALSO I started using Quest Protein Powder for shakes, and it has many other uses.  You can bake with it.  Low WW Points and yummy stuff!  I have made Quest Waffles, Quest Cakes, Puddings, Ice Cream and more.  I also use their bars.  The PUMPKIN ones are to die for.  All are more protein than any other powder and all has less than 1 gram of sugar. I love Quest!!

So I am going to work through the pain, continue to eat clean and healthy, lose more weight and meet more goals!  Until next time..........

Thursday, July 21, 2016

Lifestyle Change

So I finally had my Echocardiogram and my stress test in April.  I had good results.  I do have a slight blockage of what appears to be -50% so I had to have a Calcium test to see for sure if it was a concern.  It was not. The Cardiologist kept me on Beta Blockers and told me to go on with normal activities. I see him in 6 months.

This scared me... I am determined to get heart healthy and make sure this never has different consequences.  Therefore this calls for a lifestyle change.  Change it up!  I joined Weight Watchers on April 24th and as of today I am just shy of -30 pounds and losing weekly.  My goal is to be healthy not skinny, not to base my mood on the number on the scale but on how I feel each day. One day at a time. Right now I can honestly say I have more energy and I am starting to see the difference in my clothes. I have a better attitude and I feel better.

More WW updates to follow.

Lupus updates.  All in all I feel pretty good most days.  Nights are not as good.... I am not wearing the CPAP because I just do not want to...My heart working hard was the main reason I was so concerned about my sleep and since I found out through all these test my heart is fine I do not feel the urgency about wearing it...I could not sleep good with it. Constant issues with it so I am taking a break. Also with the weight loss I am not snoring as much or as loud according to my hubby.  I am however still having the hand and arm pain and numbness that keeps me awake. Considering talking to Dr again about this although I do no think there is a whole lot they can do about it. It is very painful all the way up to my shoulders on a bad night.

I am getting good exercise at the pool. I go 3-4 times a week and do lots of arm and leg movement.  I use a 50 SPF but the sun is really drying out my skin and I do have several sores as well. May have to go back on Cellcept if they continue.

I see my Rheumatologist in November.  I plan on shocking both him and my Cardiologist with my weight loss when I see them next.

Wednesday, April 20, 2016

Perspective....on Lupus

I just don't know how to feel some days... I know I should be positive and most days I am....I know God has a plan for me but some days I just don't see it... really don't feel comfortable talking about it to anyone...So I am blogging it.

I was suppose to have an Echocardiogram and a Nuclear Stress Test yesterday (the 19th) but insurance is still pending so I am waiting on a call from my Cardiologist . I have an irregular heart beat. My Cardiologist mentioned the possibility it could be from Lupus... I am so scared but trying not to be...UPDATE: They just called and the first the hospital can get me in is April 29th!  I told the nurse I could die before they get these test done... Days like this my faith seems far away but I will not run away, I will be strong...

My hands are really killing me today from the osteoarthritis ...I can barely type or do my Bible Journalling or hold my iPad or iPhone or my tea cup or anything...I am on new medicines for Osteoarthritis it's helping my hips and groin and knee pain but not my hands or my back.

I can't sleep although I am on medicines to help me.  I have to use a CPAP machine.  It does seem to help the Sleep Apnea but not the sleeping part. It's annoying.

I have a Primary Care Doctor, a Rheumatologist, A Neurologist, a Orthopedist, a Cardiologist and an Optomologist (I just got new glasses yesterday.) Have to get my eyes check once a year because of the Lupus medication. I feel like a hypochondriac.

I have always prided myself in the fact that if I said I was going to do something I did it when I said I would in a timely manner.  I loved being a Center Director in Corporate Childcare for 25 years.  Now I am retired on disability.  I make plans and break them, never know how I am going to feel and because of this I can't be consistent in anything.  I can't remember things that I am trying to say or do and some days I just don't know what to do with all this...I won't even begin to discuss my weight and  how I can't seem to control it at all....

Sunday, April 10, 2016

Bump in the Night

I was up all night April 7th with weird heartbeat that I could feel bumping in my chest.  I could not sleep and kept changing my position to see if it made a difference but it did not.  Concerned I got up and took my pulse.  It was skipping beats 4-6 times a minute. I went back to bed and still could not rest.  Went to living room tried recliner, no rest. Back to bed etc... started to go to ER but waited because our local hospital is not where I would want to be with a heart issue and the other 2 are 30-45 minutes away.  So I went to my Primary Care Dr. at 9:00 am. They did an EKG and a Rhythm Strip and complete blood work. BP was 140/80. She said it was probably PVC (heart palpitations) but that I need to see a Cardiologist today. It being a Friday she put in an emergency referral and I have an appointment at 3:30 p.m. In Buford....1 hour from home.  She said the EKG looked ok. But insisted I go to Cardiologist. UGH!!

After many questions the Cardiologist put me on Beta Blockers (Metropole, Tartrate 25 mg.) and magnesium. My blood pressure was 150/90. (Has been 130/80 like clockwork for years)  I have to have a Echocardiogram and a stress test next week. (They couldn't do it then because the emergency referral was pending and the lady who does them at the Insurance Company went HOME!!!! He named several things he was looking for. Of course the Lupus comes into play. It can effect the lining of the heart which could cause this....Soooo he told me not to do anything strenuous this weekend and they will call me Monday. He is on duty this weekend if I get worse.

Saturday morning I decided to go ahead with the pedicure I had planned to do yesterday and so I pampered myself and threw in a manicure as well... Stopped at Starbucks for a Chai Tea and during the drive home I experienced a dull ache or maybe pressure in my chest. Nothing major but it continued off and on thru the afternoon. I just couldn't decide if it's in my mind, my boob or my heart..... Sure can't afford the deductible if it's not an emergency...Hoping I will know if it's an emergency.

I did not call Dr. But I checked with our daughter in Florida (she is a medical assistant to a cardiologist and has been for 10 years) she said if I wasn't gonna go to the ER then to take Tylenol and use a heating pad to see if it makes a difference.) I seems it did.

I went to bed at 9:00 and put on m good old faithful PCP.  I woke up at 5:00 am.....NEVER slept that long with my PCP and I never change my position from my back all night!  WEIRD!  But good.

Got up at 5:15 am and had a cup of Chai Tea.  So far so good this morning. Debating on whether to go to church or not.  Will continue blog throughout my newest journey.

2 Corinthians 1:3-5 Praise to the God of All Comfort
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.  For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.

Thursday, February 25, 2016

UPDATE CPAP and more

WOW!  I haven't blogged since October.... Really been doing ok.  I have bad days and good days.  The bad days I just rest to avoid more bad days and that seems to work.  If I overdue it I pay for it the next day.

A quick update:

I got my CPAP Machine Wednesday the day before Thanksgiving.  What a day to get it.  We had company coming in and I was soooo stressed about this machine.... I was scared and depressed and anxious and I hated it......I hated it the 1st 3 months!!!! I did put it on every night.  I never made it but a few hours.  Maybe 3 hours or 5 hours.  Then till 3 am...Most of the time it was because it was not keeping a good seal around my mouth and it would start leaking air and it is really noisy when it is doing that so I would take it off and try the next night.  I went back at least 3 times to have it fitted.  They gave me a smaller mask and it made a difference.  There was lots of trial and error and I still don't have it down pat but I can tell I do sleep better..and it is more refreshing to put it on.  I still don't make it the whole night but I know I will.  Eventually... I don't dread it or hate it anymore.  I have excepted it and I tolerate it...Soooooo

Jason and Rose and boys and JJ and boys came for Thanksgiving long weekend.  It was very nice. Great food and wonderful family!

Regina and Dave and girls came for Christmas and I got to see my newest little granddaughter Daelyn.  SOOOOO Precious!

Heather and Matt and kids were here for both weekends.We all had Christmas morning at our house.  It was so nice.  Been a LONG TIME since we had kids Christmas morning.  It was very special.

I had a lot of help in the kitchen from the girls.  My back kills me when I stay in there too long.  I hate it but there is nothing I can do but take Tramadol and rest.

January was ok...wanting snow but not enough to talk about.  I did start target shooting with a few friends.  My first time was Jan. 14th. We go every Friday morning.  (It's FREE for ladies)  I am much more comfortable with my handgun and just applied for a concealed weapon permit.

I did get really sick Feb. 10th.  Rick and we're both sick for like 2 weeks.  We both had sore throats and cough and headaches.  I ended up getting a fever and my throat was soooo sore. I thought I was going to have to go to the hospital but I went to Dr and got a shot of antibiotic and a steroid shot, an inhaler and pills for antibiotic and Prednisone.  So glad to have that over.  After that I had some random joint pains.  I think I went into a flare for the illness.  I had left knee pain and right shoulder pain.  A week off and all is better... So weird....

We are ready for a quick weekend trip from Jason Rose and boys (tomorrow!).  The guys are all going to the Atlanta Motor Speedway Sunday then back home they go.  But looking forward to their visit.

I have a Rheumy visit March 22nd. That will be my next update but I don;t expect anything to change. At least I hope not.