Category Archives: Uncategorized

May16

Day 206(5/16/17)

Posted on by
Standard
hair

Hair @ 6 months after HSCT

Good morning people, it has , only taken me 5 tries to get this far!  I am about ready to throw this thing across the room! I just got finished with my iron infusion. I had been sleeping almost all the time but once I got my first infusion last week, it was amazing how I felt.

Since my last update, I have found that I can hold a camera and click the shutter button with my right hand!  I used to have to turn my camera upside down so I could push the button with my left index finger.

I have curly salt/pepper hair, but I will take it.  I use to always drive from Texas and get a perm by Georgene every 6 months to achieve the exact same style!!  That’s only about  525 miles. This time I only went about 1500 miles but I would do it again in a heartbeat!

This has been the best decision I could have made for me. I know people will get to where they won’t want to ask how I am doing because I don’t know when to shut up! I am so happy with the little improvements that I am just giddy! So if you ask and I don’t shut up just tell me to do so. My parents were very concerned and sceptical of the whole procedure but they have both changed their attitude and are very happy with my improvements also!

Love each and everyone of you for helping me achieve HSCT.

Apr21

Day +181(4/21/2017)(6 months)

Posted on by
Standard

I am 6 months post and had my eye exam yesterday where I received some very good news. He had me do the good old “follow my finger or pen”  and of course I can’t see for myself but he told me that my left eye was a little jerky following it. My eye use to be so slow that when it got to a certain point it would sling to catch up with the right!

This test was done on me in April 1992 at my first visit with a neurologist and to my surprise he gave me his ruling.  95% sure you have MS so the next week I had my first MRI and it showed the white plagues on my brain. I had gone to this appointment by myself thinking I needed a back doctor instead! Needless to say I walked out of his office thinking I had been dealt the death card.  I called Jimmy in tears and we met at the apartment and had a good teary-eyed talk.

After learning what MS was all about, we realized it wasn’t a death sentence but a life in prison sentence!  As the years went by and my movement slowly went downhill, normal life became a big pain in the butt but Jimmy and I stuck it out.  Two weeks after my diagnosis, I had my first bout of optic neuritis and we decided the my fate had sure enough been sealed.

With my treatment with HSCT, I think my life sentence might be coming to an end.  I can now turn my head to both sides and only see one thing that I am looking at instead of two! Maybe one of these days the doctors will let me drive again. Best decision I ever made going to Clinica Ruiz in Puebla City Mexico!

Apr14

Day +174(4/14/2017)

Posted on by
Standard

Today has been the worst rollercoaster day that I have had since coming home from Mexico!  My right knee doesn’t want to bend on its own today and really that’s the only thing but it sure is a pain in the a$$!  I hadn’t thought about having to unlock it to sit down in awhile, but my symptoms will always be there to rear their ugly little head to remind me I still have the MonSter!  But today will never overshadow the good days I have had so far.

Today was also Dad’s 84th birthday!  Mom and I took him to the China Buffett in Kennett.  He enjoyed the food then was rewarded by getting 2 fortune cookies in one bag.  They were good ones too……….

Inch by Inch life is a cinch. Yard by Yard life is hard!  and

You can buy a doctor but you can’t buy good health!  (Unless you get HSCT!)

Mom had 3 fortunes in one cookie and I can’t remember them or mine.  We then went to Wal-Mart and I got him a new weed eater for Father’s Day.  He gets it early because his other one quit working.  We all had a wonderful day and we ended our time in Kennett going to the happy hour at Sonic!

Everyone have a Good Friday and a Happy Easter!

Apr4

4/4/2017

Posted on by
Standard

Made it home and all is well!  I had a staggering thought when we were driving home – I just had a steroid shot to go along with my rituxin and after the last one in February, I ballooned up about 6lbs and I am still working on losing that.  My reward for today was a Sonic strawberry slush w/real strawberries.  I will have to watch after this and lose what I added and not gain any between now and June 6th. I would say it was worth the extra weight but oh yeah it is but I hate the outcome! Dr. Gomez gave me her okay to put her name and info out there for anyone in this area to see her for the aftercare:

Kennett Oncology and Hematology Associates

Gilda H. Gomez, M.D.

1231 First St, Ste 8

Kennett MO 63857

573.888.2900 office

573.888.2906 fax

 

 

Apr4

+164(4/4/2017)

Posted on by
Standard

Here I am again at the Twin Rivers Cancer Center getting my second rituxin infusion. My vitals are 98.2 temp, 117/62 blood pressure, 93 pulse ox, 87 BPM. I know everyone finds these numbers exciting but it is a way for me to keep up with it.  As soon as my bloodwork gets back, we’ll have another set of numbers!

It has been two months since I have updated on my symptoms. They haven’t changed much since last time.  My signature is getting so much better and close to what it originally looked like.  I can actually use a stick pen at the cash registers instead of having to dig out my special pen from my purse.  My balance is slowly getting better as long as I stand still but my right foot drop sure causes me trouble in walking.

I have an appointment tomorrow at Hanger Clinic to be evaluated for a WalkAide. This unit works like my Bioness L300 but you don’t have to wear shoes or carry a handheld unit for control.  It has been three years since I have worn my Bioness machine and it shocks me but it is out of sync.  Since I bought my unit, the lab has quit selling them and working on them. Just like other medical equipment and suppliers, the first question they ask is “Did you get it from us?” You answer “no” and their answer is “Sorry, we only work on units we sell.”. GRRR!

It took me forever to get a rep from Bioness to contact me to look at it and I go see her in Jonesboro on April 28th at Health South.  We shall see then if it can me recalibrated. If it can’t, I’ll have a used machine to sell! It was purchased in 2011.

I have my last physical therapy Friday so I will be on my own!   I have purchased a hand grip exersicor, some thera-putty, and some floral marbles.  This way I can continue these at home,as well as my other exercises.  I was showed yesterday how to do some exercises in my chair for my core. These will help with my balance  and maybe my walking. Since not walking my back muscles have went downhill and they go out way before my leg muscles do.

My bloodwork looks good. My glucose is high but we ate breakfast at Hog Wild before coming over here.  I use lots of sugar in my coffee! My white blood cell count is 7.5 and my lymphocytes are a little low at 19 by one point and all my liver counts are good.

My treatment is almost over and so I shall close this post for now and proof this so I can post it.

 

Have a wonderful day!

 

Feb16

Day +117 (2/16/17)

Posted on by
Standard
What a confusing day after the mail run. Rec’d a letter from my drug insurance coverage on 2/6 stating that my 100mg infusion of Rituxin had been approved thru 12/31/17 on Medicare Part B with a $35 copay! WooHoo, I was so happy and had my 1st infusion on Feb 10th. Just got a letter from my medical insurance and they have denied my administration of the drug. The appeal has started! I was told this didn’t effect the approval for the drug so if the admin of the infusion is under $500 each time, I still have enough from my fundraising to cover it! What a headache!!
I will have to go to Kennett tomorrow to sign an Appointment of Representative Form to get the appeal started.  Thank goodness I don’t have to have another infusion until April 4th!
What a mess!  Sorry guys, just had to vent!

 

Feb7

Day +108 again

Posted on by
Standard

Things went well with the Rituximab infusion and my next one is April 4th.  I have an appointment with the doctor on Friday.

I rewarded myself with a Strawberry slush from Sonic even tho I still should wait a couple months for fresh fruit! I messed that up yesterday when I ate out and the special came with a side salad. We were driving home and mom asked what the difference was between the salad and guacamole?  We both started laughing and I said there wasn’t so I survived and Mexican restaurant here we come! She asked what dressing , I told her and didn’t think anymore about it.  It sure was good tho and so is my slush!
I haven’t had a slush since September before I went for HSCT.  I will be back on the wagon after I finish this one.
I will reward myself again after I have my second infusion in April!
Dec2

Day +41 (12/2/16)

Posted on by
Standard

Well it has been a month since I have been home and things are going great.  I have had my weekly blood work and the numbers have been slowly going up.  I also have had blood work to tell me if I have any ‘b’ cells left.  Unfortunately, I have no idea how to read it.  I am going to email it to Dr. Ruiz for him to look at and if it shows they are dead then I hope he will tell me that I don’t need to worry about the Rituximab© infusions.  I still haven’t found a doctor that will write the script even tho it has been used to treat auto immune diseases and transplant patients, which I fall in both categories.

I have had a complete blood test (cbc) each week since I have been back and so far the numbers have been in the normal range except I am a little anemic. I just sent copies of the results to Dr. Ruiz in Mexico and hopefully he will tell me I can go to church and maybe eat out!  TV dinners and the 4 walls of my house are getting boring.  I have been to the grocery store and Fred’s but only when it hasn’t been busy.

My head has been on an itching spree!  I still am losing it (the hair not my head) and I think I will have to have Dad shave it again.  They said that it might be five months before it comes back other than just patches. All of this is minor hindrances compared to what little improvements I have seen.  I even used my walker for just a few feet and I think Mom was even surprised at how much more I was picking my feet up.  I can even open and close a pair of scissors with my right hand which I haven’t been able to do that in years!  I am still only having to get up once during the night instead of every 2 hours!

I go see my PCP Monday for him to look at my thumb and see what I have done, the joint is twice as big as the other one.  I also need to see if he will set me up for physical therapy so I can get started with that.

I am also trying to get my power wheelchair worked on and I have only been dealing with that since September!  After I got the doctor to get the papers filled out, I called to check on the status and was informed they did not have a technician in this area.  I thanked them for calling to let me know, she started to thank me and she realized that I had called her!  Duh!!  but she was going to call me that day – yeah right!  Anyway, I was given another company to call and am waiting for them to get back with me but they aren’t contracted with my insurance. But that really doesn’t matter very much because I have to have it fixed before the gears really lock up!  I have a mind to call the manufacturer and tell them if the chair can’t be worked on in this area then they need to quit selling it in this area!

I need to stop telling the story because I can tell it is making me mad all over again.

I will try to do monthly posts to keep everyone updated on my updates so —

Everyone have a Merry Christmas and

Keep Jesus in the Season!!

Nov10

Day +19 (11/10/16)

Posted on by
Standard

Not much has gone on these past three days but resting.  I got to go see Mom Wednesday and she got her some new wheels (walker) Tuesday.  Her balance is still off but she said she is getting better everyday.  She sees her cardiologist next week and a ENT doctor at the end of the month.  So glad specialists are so busy that you better not have anything major wrong because no telling how long you’ll have to wait!

I did get to see Shadow again and he wanted in my lap but he had to settle for just some scratching on the ears. Didn’t get to stay at Mom & Dad’s very long because both of them had the sniffles but I got to see them!

I go see my PCP tomorrow and get my first blood work after coming home.  I am running a minor temp of 99.5º so I hope it doesn’t go any higher! Never mind, took my hat off and tried it again and it’s 98.4º.  I have one of those thermometers that you run it across your forehead.  I guess it is true that wearing a hat in the wintertime keeps the heat in your body!

I am going to the supermarket after I go to the doctor.  It can’t be any worse to go there than going to the clinic where sick people goes.  I will wear my mask and carry hand sanitizer to both. My nephew, Matt, called today to see how I was. Everyone keeps asking us if I have seen any changes and I/we keep telling them that it can be up to two years before we see any if at all.  All I ask is to stop the progression so I don’t get any worse.

Will get back with everyone later!