Category: Disability

Where in the hell have you been?

give it all you've got
~ msgracefulnot ~ 9 Comments

It feels like I have been to hell and back, AND I’ve got the scars to prove it. ( I could share a post about the scars alone, but let’s not do that now)

I still laugh when I tell someone that I started a blog about MS several years ago, yet I can’t remember one post I made about MS. ( Ok, I do remember advocating for Tysabri and bladder incontinence treatments, but not much else) If I remember correctly, 80% of what I what I wrote involved aging, empty nest syndrome, traveling, my kids, a bit about my grandkids, and let’s not forget Einstein and all that bullshit.

While I am no longer at my “rock bottom”, I also don’t want to rehash everything that has happened yet. Instead, let me highlight a few of the BIG changes that have been going on (in no particular order)

  • I QUIT SMOKING!!!! Yes the 2 pack a day chain smoker for over 30 years quit smoking. It’s been over a year.
  • I gained 20 lbs from quitting smoking
  • I had a male best friend and a female best friend die. How fucking dare they?!?!? Didn’t they know I needed them?!?!?!?
  • Maybe 10 more lbs gained from that.
  • I had bladder cancer. I had surgery, I had BCG (chemo), was declared cancer free, only to have it come back. REPEAT (I had surgery, I had BCG treatments, and was told, “I don’t see any cancer, but we are going to repeat 1/2 a treatment of BCG for 3 weeks and then repeat a cystoscopy in August.) If they find cancer in August, I will lose my bladder ….. literally. 😦
  • Not only did I have to stop Tysabri, I also had to stop all MS medications. HUGE increase in disability!
  • I have at least 3 more surgeries this year….. blah blah blah

Can I just say, It’s been rough?

I can’t believe I didn’t mention. I FINALLY LEFT EINSTEIN. Left like moved out, no contact, ( other that minimum kid and dog stuff) Not sure which is the bigger accomplishment, quitting smoking or quitting him, but either way, YAY!!!

I also traveled to Seattle, and not only met, but also stayed with a blogger, author, and overall Rockstar that I have admired for several years. I WILL write more about that more in the future……

On that note, I am going to stop typing.

for now

Isn’t it Ironic?….smh

~ msgracefulnot ~ 2 Comments

Have you ever heard of the Link or EBT card or food stamps? Usually people receiving government benefits such as these have some kind of disadvantage that prevents them from earning enough money to live on. Examples might include a mental or physical disability. Lack of childcare etc. So why are the benefits so hard to use?

I’m not sure if I ever stated that I was on Social Security Disability before. (very limited income) This year with the increase in my medical expenses, I have qualified to not only receive financial assistance to help with those bills, but also have qualified for the link card.

Last weekend, I tried to complete an online order at Sam’s club as I have frequently done in the past. Pre-covid, the system was called Click and pull. The process was usually fairly easy and straightforward. You selected the items you wanted by placing them in your cart, and when finished you would select the date and time you would be picking up your items. When you arrived at the store, you would go to a special “click and pull” desk with your list, or confirmation code and your payment. Someone would then bring all of the items to the front of the store for you, and even help load your car. Win win right?

Why not THIS time?

I went online, selected my items and was directed to a new area called, “curbside pickup”. Okay. no biggie right? Well apparently it is a big deal. You must pay for your order before the club will pull it. OK, I get that, but WHY DON’T they take link online?!?!?!? If I need to use the link card I have to shop for myself, which kind of defeats the advantage of online shopping doesn’t it?

I even called the store to explain my problem and asked if I could pay for my groceries with my credit card, but switch the payment types at customer service when I picked up the food…… NOPE! As a side note, a good portion of the items I tried to purchase where eligible for FREE SHIPPING, but you also can not use the link card for shipped items?!?!?

Everywhere in the US is still encouraging social distancing. People that are immuno-compromised are supposed to avoid others even more. So WHY do I have to go in the store?

Am I the only one who sees the irony of this?

I feel like the system is designed “to keep a man down” more than to help them.

Check out my New Implants!!!

~ msgracefulnot ~ 17 Comments

OMG Grace! Is that ALL you do….. talk about your foot?

Well that’s not ALL that I talk about, but since there is not much that I can do without it  affecting me, yes I talk about my foot A LOT.  And my wheelchair, but I have that because of my foot, so I guess it’s about the same huh?

I promise to write about something other than my foot soon, but first I would like to share some updates for anyone that is interested.

0402201617First of all, I have now been casted in every different color material available.  Who would have thought that something like that would go on my list of “achievements”?!?!?0402201529

Secondly,  while there is still no end in sight about the amount of time I will be non- weight bearing and in a cast, the incisions appear to be healing well and I am no longer in much pain.

0422201927Third, while I swear I have not put any weight on my right foot, I can’t say that I haven’t been a bit self destructive during my recovery. Not only did I have a bit of an obsession with tearing apart one of my casts, but I also attempted to go down two stairs by myself and ended up being launched from the wheelchair.  Thankfully, the doctor said the x-rays showed the only damage I did was to my pride.  Yay for me!!!!

Thank you for taking the time to stop by today.  If you have a few more minutes, would you mind sharing your longest to recover from injury?  Did you follow doctor’s orders? I look forward to hearing from you!

 

 

 

 

 

Are you ready to live?

~ msgracefulnot ~ 26 Comments

A couple of weeks ago, I shared some admittedly pretty scary information with you in my post, “Are you prepared to Die“?

I’ve spent a lot of time thinking, reading, and otherwise researching what my next steps should be.  While doing this, I have created two more quandaries for myself.  The first being not knowing who or what to believe.  People that claim to be specialists tout one thing, while other people claiming to be specialists tout the exact opposite.  You also have your everyday ‘average people’, also equally divided, demanding with as much fervor as two rivals debating politics that they have the answer.  (They must, they live with it everyday)?????  I find that I am overwhelmed not only with all the information available, but also by verifying the ‘credentials’ of the sources.

I’m going to table this quandary for now because I honestly feel like I am playing Russian Roulette.

The other decision that is plaguing me is, “Am I prepared to live?”    You’re probably thinking, “OF COURSE YOU ARE!!!”  At first it seems like a no-brainer doesn’t it?  Well duh, of course you want to live!!!  But is it really that simple?

Let’s say your doctor tells you that in order to live you have to murder, and eat someone once a week.  Apparently, the nutrients in another human would allow you to not only be disease free for a week, but they would return you to a more ‘youthful’ state with unlimited energy etc.  While some people may feel that this would be acceptable to them, for me it’s a deal breaker.  I would probably go so far as to purposely end my life to prevent some well meaning person from TRYING to save me.

I know that my example sounds extreme, but as a “professional addict” I assure you it’s not.  Do you know that smoking can kill you?  I still smoke.  Being overweight can also kill you, yet I won’t turn down cheesecake. etc etc…In addition to taking away those vices, you should change the things you eat.  Yes take away the things you enjoy, and ADD eating dirt (the food you most abhor) or  only being allowed to eat something that someone else has chewed up and spit out.

I am purposefully being facetious because what one person finds an acceptable another would NEVER do,  and I’m trying to make a point.  DECIDING TO LIVE takes a lot of work.  It requires many changes and some sacrifices. while at the same time knowing that you are going to die at some point anyway.  Up the ante by adding the FACT that there is no guarantee these changes will help, they may even make you sicker.

But it worked for my neighbor’s sister’s third cousin once removed’s dog?!?!?!? 

All sarcasm aside, I am beginning to accept the fact that in order to continue living, I have to make some serious changes in my life.  None of them are appealing to me, but I find I’m not quite ready to die.  I’m not prepared to swear to a course of action yet, but I have begun making changes. I reduced the number of cigarettes I smoke from more than a pack a day to 2 cigarettes a day.  I have been tracking everything that goes into and out of my body. ( I promised no more sarcasm today so I will just leave that one alone for now)  I have been investigating 4 MS drugs that I have been introduced since I began TYSABRI.  To be honest, the side effects of all of them are scary as hell so discontinuing any disease modifying treatment is also on the table.

It’s very dangerous for me to “get all lost in my mind”, so if you are willing please take a minute to share something you have struggled with or are struggling with and how you are working to overcome it.  It helps so much to know that we are not alone.

Are you prepared to die?

~ msgracefulnot ~ 23 Comments

Before I continue, let me assure you that this is NOT a suicide note, nor is it a notice of my impending death.  This is a question I’ve asked and answered myself many times in my life.

If you’re not dying, why do you bring this up now?

I just received some unsettling blood tests, and I have some choices that I have to make.  When I receive bad news, in order to not “freak out”, I look back at all the things I have survived in my life to remind myself that I can be pretty damn tough.

As many of you know, I was diagnosed with MS over 20 years ago.  What you may or may not know is that I have had 3 family members die from complications of MS.  This disease has been “in my face” for many years before it actually caught me.  When I was diagnosed, I asked myself if I was ready to die, not if I was prepared, but if I was ready.  The answer was, “HELL NO!”  For the first year though, I didn’t do much to FIGHT it.  Instead, I began drinking ALOT.  I also started behaving very manically, (well if I’m going to die anyway, I’m going out with a bang)

About a year after my “MSaversary”,  I finally stopping running and faced the diagnosis. I began taking the disease modifying drug Betaseron.  For 10 years, I gave myself an injection every other night, yet my MS symptoms continued to steadily progress to the point that I was in a wheelchair more often than not.  I was constantly depressed.  During this time, my kidneys began shutting down, AND I was diagnosed with cervical cancer.  Around the 10 year mark, I think I WAS ready to die.  Not prepared, but ready.

At then end of 2009, my girls and I made the very long hard decision that I was going to begin receiving monthly infusions of Tysabri even though it could kill me.  I decided that QUALITY of life meant so much more to me than QUANTITY!  I have previously written about how the decision was made in a Five part series if you would like to read.  The decision to start Tysabri Part 1,  The decision to start Tysabri part 2, The decision to start Tysabri part 3, The decision to start Tysabri part 4, and finally, The decision to start Tysabri part 5.

To date I have received 121 infusions of Tysabri.  I credit this drug for giving me my quality of life back.  I do not regret my decision in anyway, in fact I have even argued with my doctor about NOT switching medications when he suggested that I consider it. Last year, I wrote “Who’s the boss anyway”? explaining my reason for denying the change.

At the end of last year, I had to see my neurologist so he could perform my yearly neurological exam, refill my prescriptions, and send me for the required JC virus test to be allowed to remain on Tysabri.  My son in law was nice enough to drive me to Chicago for the visit.  Because of my newest list of injuries, the doctor was unable to provide a complete exam.  The parts of the exam he was able to perform showed that I had increased numbness (lack of feeling) on the left side of my body.  I have also been having some issues with my vision (though I have been attributing that to my age).  He wrote the refills for my prescriptions, and the order for the bloodwork, and we agreed I would come back for a full exam once my foot healed enough to be able to walk on it.  (hopefully March)

NOW let’s talk about these unsettling blood tests….

My bloodwork came back stating that I was now JC+, meaning I had the John Cunningham Virus (JCV).  Not only did I test positive for the virus, but my titer levels are considered very high. 4.8!

hmmmm now what?  I have a decision (well several to make)

Here are the drug facts

In addition to revealing that I have now become JC+, my bloodwork revealed that my Absolute Eosinophils are high.  What the hell does that mean?  A quick Dr. Google search said…

Eosinophils are a type of disease-fighting white blood cell. This condition most often indicates a parasitic infection, an allergic reaction or cancer. You can have high levels of eosinophils in your blood (blood eosinophilia) or in tissues at the site of an infection or inflammation (tissue eosinophilia).

OF course the first thing I saw was CANCER……cmon!!!!!!!  Seriously?!?!?

After speaking with my Neurologist, WE have decided first to have the bloodwork performed again.  (there is always a chance for a false positive?)  Because of the decreased sensation on one side of my body, the increased balance issues, and vision changes, IF the test still comes back with a high Titer level, the first step will be to undergo further testing for PML.  I haven’t even thought about further testing for the High Eosinophils, I honestly believe that everything else going on in my body is causing that.

I have so many questions and decisions to make that I find myself asking again, “Am I prepared to die?”