a yarn/thread/fiber loving fool with MS

Archive for the ‘Multiple Sclerosis’ Category

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I am indeed alive.

been way way too long since I was around.  life since my last post has been one trial in strength after another.  but I’m still here.  the MS took full hold sending me to the hospital again, this time while in DC visiting RR… other complications ensued and that stay was 2 months long…  but here I am back in Tuscaloosa, I knit, I play on Facebook, I volunteer at the Humane Society of West Alabama working at the cat house.

8/5/2014

While waiting for my SSD I was unable to make car payment and it was repossessed.  I miss my car.  While in DC it really didn’t matter, but back home it does. I’m able to use my mom’s car but … Not the same, I have to ask and feel guilty.

Sooo I’m trying to raise money for a substantial down payment via gofundme.com

http://www.gofundme.com/bbuam4

should you happen across my blog please consider helping out.  It will be paid forward.

 

 

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The cloud is showing it’s underbelly

That be the “silver lining”.  Just trying to be clever….

Sooooooo, my Sis actually brought me a b-day cake, some flowers and $20.  ACK!!!!  Much appreciated, but I no can have the cake…not good for reason I was in hospital…..oh well, thought that counts.

AND THEN AND THEN……. I got a call from the local Social Security office…..they have approved me for  “presumptive disability”…. not full disability yet, but it means I can get SSI….WHOOT!  A lady in a Facebook group for MSer’s said:

Presumptive means having a reasonable basis for belief or acceptance; so it sounds to me that the State believes you have a good/strong case.”

YA!YA!

Now then,  my BFF R.R. went and bought himself a BMW sports car, convertible….SIGH. Don’t know what I’m going to do with that boy.  But since it’s an automatic and I can drive it when I go back to DC…. well now.  I called RR right after I got the call from SS.  He was glad and wanted to know if I was coming back to DC next week…..OH I WISH~~~THE TEMPTATION IN GREAT~~~  His Birthday is Monday and Friday is his promotion ceremony to Lieutenant Colonel.   I so want to go, maybe just for 2 weeks….I know I need to stay put in Bama till this disability determination is taken care of.

Ok so……. now I can go back on the lexapro, I can afford the co-pay OR MEDICAID CAN PAY FOR IT!!!

Better living through chemistry…

Hello…Hello…I am still here…

Yea, yea, I’m here, been on one hell of a ride since my last post, another surgery, and a month in the hospital, 2 weeks of that in rehab trying to walk and learn how to “re-do” daily activities when the body does not do what the brain says do….

Surgery…. So sometime in May I just started feeling worse, listless, not eating, and sleeping alot.  I figured it was the MS.  WRONG, so wrong.  Went to the doc end of May, she admitted me to the hospital.  My white count was extremely high and some other blood work was wonky and I had not had a bowl movement in over a week, I was dehydrated because I could not keep anything down, let’s just say I was messed up.  The docs I saw in the hospital spent a damn WEEK trying to figure out what to do… they called in Dr. Duffy, the one who did my kidney surgery, because when you have only 1 kidney it presents it’s own set of problems with meds and die’s for MRI’s and CAT scans… Okay, so they find a “mass/cyst” blocking my intestines…..of course the C word comes up…they do a needle biopsy and it shows just infection.  It’s also starting to really really hurt in the area of the cyst.  But here’s the catch, mass is also near my right ovary, so they call in OBGYN docs, geeze.  Soooooo I was transferred to another hosptial 60 miles away because no one in this damn town deals with “ovarian cancer”.  EVEN THOUGH THE DAMN BIOPSY SHOWED NO CANCER.  I was so damn drugged from pain meds and whatever the hell else they had in that IV I really had little to say about it…and I just wanted the pain to go away….

I meet with the docs their and they felt a hysterectomy was in order.  Shit a MAJOR surgery.  Cut Cut Cut.

I was also experiencing some major edema, so bad I could not put on normal shoes.  While in the hospital it got worse.

Okay, so after surgery I could not even walk the edema was so bad, I could not lift my arms above shoulder height, the edema was making my limbs so heavy I could not operate them.  So between that and the Multiple Sclerosis I was totally screwed up.  So off to two weeks in rehab working with physical therapist learning how to adapt to life with my new limitations.

I took early retirement, disability retirement, from my job because there was no way in hell I could go back to work.   Now I’m just waiting on social security disability, hopefully I will get it because my job retirement is only $500 a month……

When I came home from the hosp., I was using a walker, could not stand up from a sitting position and various other things.  I’ve managed to work up to using a cane and can actually stand up on my own, both major accomplishments.  So now I spend my days watching TV and playing  with yarn and thread, you know, knitting and tatting.  I do my best not to go crazy, not being able to drive yet  the walls close in on ya.

Okay, so I’m back.  Will post more often  Back to my tatting.  Here are a few of my tatted button snowflakes.

Sorta, kinda, maybe

The MS continues it’s unpredictable course…. Such is the nature of the beast.  One day is “good”, the next “bad”.  One day I can use the legs, next day, they are “usable, but very limited.  It can take 15 plus minutes just to get into bed to prop them up.  The edema from the  Prednisone is HORRIBLE!! So bad now that I’ve got a spot that is “weeping”.. yea, nice clear fluid leaking out of my right ankle…around the ankle bone.. My face is swollen, Moon Face, it’s called.  Gastro stuff continues..UGH… Start on a lower dose taper next week..hopefully the side effects will ease up….I am an emotional WRECK… go from crying, to good spirits.. back to crying.. trying to get what is in the mind into words is difficult.

I’ve got the the FMLA Forms (Family Medical Leave Act) filled out and turned in.  I’ve always been stingy with my sick leave and vacation time,  so I should be “ok”.. Hope so…  I don’t think I’m going back from this….Time to put in for medical/disability retirement..then apply for Social Security Disability..Only time will tell..when I go back to see my Neurologist, it WILL be discussed..

Ok, time to go play with yarn and get the feet up..

Later folks.

Not the same as I once was

Has been one hell of a ride since I checked in here last.  I think about what I to write when I wake up. I do, really.  Getting up in the mornings takes a while.  I have to “wake”  up the muscles, stretch, sometimes for 30 minutes before I even sit on the side of the bed.   Sit on the side of the bed for another              10 – 15 min to let the body get used to being up right, grab the cane and shuffle off to the bathroom.  Make it to the kitchen, make coffee..not living with out that… while it’s brewing, put the bed back together.  I REFUSE to get back in and lay there.  So I put my knitting/yarn/ what ever out, get the computer going..and so begins the day.

The new lesion is in the cerebellum , not a good thing..The cerebellum is responsible for coordinating movement, planning, motor activities, learning and remembering of physical skills and for some cognitive abilities. Among other things.
This is what I am going through:
# ataxia (difficulty in coordinating movements)
# tremors
# loss of balance and vertigo
# muscle weakness
# dysarthria (loss of coordination of the muscles controlling speech)
Speech is hit or miss right now.

I’ve had occupation and physical therapy out to the house..yea, yea.. There is a definite issue with the balance.  And there is strength loss.  Stairs are are hell, so doing some strength stuff.   Speech has taken a hit.

I’m on week 2 of the prednisone tapper…YUK!!  While it is helping the the MS crap, it has totally screwed my taste, my gastro, increased the edema that I already had.  OH, and the insomnia is horrible…sleep is not as screwed as it was last week thought.

I managed to get to the Bobbins & Needles groups at Barnes & Nobles Starbucks last night. One of my fab yarn buddies picked me up, we stopped by Michaels (YARN ON CLEARANCE!!)  and I got some great company.  Getting out is important..  These 4 walls get closer and closer.

Well, Appreciate the wind and blowing on you face, the clouds that are in the sky.  Even standing in the rain can be a good thing.

Okay, off to play with yarn…

Since my last post

My first week back at work after Kidney surgery was, well, exhausting.  I managed to put in basically full days.  My balance was kinda screwed more than normal, but hey, I live with it…it’s part of the Multiple Sclerosis…..

Now by Friday afternoon the NAUSEA was starting.  Since several people I had been in contact with had the dreaded stomach flu that has been going around, I started to attribute it to that…WRONG WRONG WRONG… I decided to go to the Doc around 3:30 or so…made it there, got signed in, by the time the nurse called me I could not bring my head about my waist without the room and everything else spinning….back in the exam room, the vomiting started….Nurse said yea, stomach flu, it’s going around…

Doc came in..I explained the feeling, the kidney surgery, the MS… he left, came back and said with the history, and recent events…HE WAS SENDING ME TO THE ER TO BE ADMITTED….FUCKING A……

Now….it was NOT the Stomach Flue…A new MS lesion has formed.. in the back area of the my brain that controls balance and that in turn caused the nausea…lot’s of it….. the lesion was in FULL TILT LETS FUCK WITH HER MODE……

Got to room sometime around 4 am, was started on an IV drip of Solu-Medrol…a steroid used for MS flairs… and host of pills for the nausea…  This is the first flair that has put me in the Hospital.

Stayed till Monday night…I got a PICC line put in for a 3 day course of the above mentioned  IV…once a day around noon a home nurse game and hooked up the IV to my PICC line….I felt like a scene from one of those Doc drama’s on TV… Line is out and I’m on a 6 week taper of  PREDNISONE.

I’ve made 2 berets and have again started on the yellow cardigan.  I’ve not frogged the other, but have started one on larger needles.  I think the larger needles are the ticket. We’ll see how far I get tonight.  One of the side effects of the steroids is INSOMNIA…. ya for me….

I’ve probably watched most of the  Asian cooking vids on YouTube along with any dealing with yarn, knitting, crafts, just DIY in general…

I’m BORED OUT OF MY FRICKING MIND…..

and we won’t talk about …. work ….

Later folks.

If you happen to stop by and make to the end of this..please  leave a comment.  THANKS

What a weekend!!

I know I’m a bad blogger.  I tend to gravitate toward blogging when my heart hurts or I’m going through something and need to put the thoughts in my head out somewhere.

That said

I HAD A GREAT WEEKEND!!!!  OMG did I… RR came into town with a buddy of his, JC, and we  3 went to the game.  JC is great, his Mom has MS so we had a nice discussion about it.   And considering he  has a masters in  Epidemiology & International Health and is currently working  as a Senior CBRN Analyst  focusing on  biological and chemical warfare defense in D.C. ~~~  OMG  I KNOW PEOPLE, LOL….  He has done a lot of research on MS treatments and gave me some good advice.

It was great to see RR, I’ve missed him so much.

Anyway, we wend out Friday night, Dreamland ribs and some poker. Saturday went to the game, watched BAMA roll over UTC.   Eh, it was a football game, I was just there for the company <big evil grin>

RR is in a good place I think, he is not in as much turmoil as this time last year.  Regardless, I still worry about him and so help me when he gets back from the ILE course at Leavenworth in Jan of 2011 and says “move to D.C.” , which he did Friday night….I just might.  But he’s got his app before the board to go back Active Duty and that will determine everything.

I guess I gotta go to work now.

Great day to all….