Twilight Zone Morning

Ok not quite twilight zone, more a I need more coffee morning, but I’m rambling anyway.

I woke up this morning and had peed the bed. While I can’t say this hasn’t happened before, it’s not supposed to happen.  I just had bladder surgery  a month ago, and PTNS this week.  I am supposed to be “pee free” for a few more months at least :(.

Ok whatever, I opened my bedroom door and found my Mom sleeping on my couch.  Hmmm that’s not where I left her last night.  I went to the bathroom , cleaned myself up, and proceeded to let the dogs outside.

While going through the kitchen, I was met by thing 2’s boyfriend looking super chipper, telling me all the animals had been fed except for D.O.G. (who sleeps with me).  I let the dogs outside, and came back in to find a cup of coffee waiting for me on the counter. ?!?!?!?!?

I stood at the counter trying “figure out where I was”, and I glanced down at the letter for a driving class beginning at 8:30….oh fuck did I get Another speeding ticket and forget about it?  Crap crap crap

Then my phone went off, it was the 4th “Are you awake text” from one of thing 1’s best friends.  ( They had been coming in since 5:30).

D, picked up the letter and headed toward the door.  Ah yes…it was his ticket, he had class.  (I’m very surprised I was able to put that together, and even more so that I told him the answer to number 15 on the test is 12-15 inches.)

Four cups of coffee later

I have finally been able to put most of the pieces together.  Let’s go back to the beginning.

The peeing thing.  Ok, this one still makes no sense, and will require a call to the doctor, but at least I was wearing depends last night and had slept on a waterproof pad, so clean up was not terrible.  I am a bit nervous that I am having an MS flare, or that I will have to start looking for yet another treatment, but I will not allow myself to dwell on that til next week.  (I’ve got more important things to do)

My confusion about seeing thing 2’s boyfriend looking all chipper at 8 o’clock in the morning.  As I mentioned before, apparently HE had to attend the driving class.  Let me elaborate on my confusion more.  First of all, D works overnights.  The NORMAL interaction between us in the morning is ME heading out the door telling him the animals have been fed.  I normally tell him the coffee maker has been set up for him.  And I am usually the one who has to attend the driving class.

When you receive a speeding ticket in Illinois, you have the option of attending a 4 or 8 hour defensive driving class.  If you pay extra to attend the class, pass the test, and stay ticket free for 6 months this will keep the ticket from appearing on your record so that your insurance doesn’t increase.  I have attended the class enough that I can teach it.  The question to the answer I gave him as he walked out the door was, ” How far from your chest should your steering wheel be positioned?”  The answer on the test is 12-15 inches, although I still maintain it SHOULD be, however far you need it to be….smh

The multiple texts from KR

The last time I had a morning interaction with KR and Thing One, it was to fight to wake them both up at 10 in the morning after a sleepover.  After answering her, “are you awake” text, I am happy to report that it was for  an exciting reason.  KR is pregnant.  Both girls have been texting back and forth for hours planning how their children will also grow up being best friends etc……  I have to smile here.  For many reasons.  I am glad that KR feels I am important enough to receive one of the first, I peed on a stick calls.  I am excited that both girls are in a much better place than I was when I found out I was pregnant.  I am excited that they have both matured into beautiful intelligent hardworking woman.

Why is my mom on the couch?

I’m still not sure about this one.  I’m also not sure why I am letting her sleep.  (payback’s a bitch) 😛  I do know why she is here though.  She came to stay the weekend with me while we get things ready for my daughter’s baby shower tomorrow.  I am so lucky that I was raised in a family that is so tight nit.  My heart is so full this morning.

I hope you all have an incredible weekend.  Lots to be done here, and more coffee to drink.

 

 

 

Shower Time

Sunday I am throwing a baby shower for Thing 1 and I’m pretty sure I will be MIA until then.  (ok and probably the following Monday)

Gone are the days that I could single-handedly whip up a party for 30 people with less than a days notice.  I have been slowly “setting up” for the last couple of weeks, and I have enlisted the help of a few of my friends and her best friend.

I found great ideas for baby themed food, games, and decorations on pinterest that I could do myself without breaking the bank.  Thank Goodness for dollar tree, dollar general, and facebook marketplace for cheap finds as well.

The picture above is my first ever attempt at making a diaper cake.  We’re going to call it a tricycle cake.

Some of the ideas I found for baby shower themed food are :

I can’t promise my creations will turn out as well, but I am going to attempt them.

For games/activities we are planning:

Mommy and Daddy Teamwork-

Thing 1 and her husband have to undress, clean, and redress a baby doll  using only one hand each.  I don’t really think they are going to have any problem with this, since they are a good team.

Changing Multiples

Because Thing One is having twins, we are asking each guest to change one baby doll while somehow holding the other.  (the only baby that can be laid down is the being changed.)  I hope some will let me record this, since I think it will be hilarious watching what people come up with.

Name Tag Game

After everyone has been introduced with their real name, I will be handing out name tags and asking them to come up with a baby related name to put on their tag.  Ie..diapers, formula etc.  Each time someone is caught calling someone by their Real name, they must give up a safety pin.  The winner is the person who has the most at the end.

Onesie /Bib decorating

Thing 1’s best friend is buying plain one-sies and bibs for each guest to decorate.

We have other games to add in also if time allows.  We shall see.

I’m looking forward to the shower, and hope to have lots of pictures and maybe video to post next week.

I hope you all have a fantastic weekend!

Healthy resources for chronic illnesses

Last week I shared, my list of Not your Typical Blogger Awards recommendations.  I mentioned in the post that I also had recommendations for chronic illness bloggers that were inspirational and motivating that I would share if requested.

As I continued to reread posts from February of last year, I realized that I had completely forgotten that not only did I actually write a little about MS in February, but I also made a video about being newly diagnosed> I was also fortunate enough to have some of those very same inspirational and motivational bloggers do guest posts on my blog.  Their names and links to their blogs can be found here.

I would like to add a few of the chronic illness bloggers that I have also begun following since that post was written that I also find very motivating and helpful.

First is Terri, from Reclaiming Hope.   Terri lives with Fibromyalgia, and offers great tips on total wellness, sharing advice on complete wellness encompassing emotional, social, spiritual, occupational, intellectual, financial, and physical aspects.  Whether or not, you suffer from a chronic illiness, I think you may find a lot to gain by visiting her site.

Next up is Heather and Dizzy from Dinosaurs, Donkeys, and MS.  Heather was diagnosed with MS a only a couple of years ago, but you would think she had been living with MS for a long time, based on the amount of information she shares.  Heather shares information about the OMS program, many exercising techniques, and relaxation techniques through her stories with her Donkey Dizzy.  She has also begun a podcast featuring two herself and two other MS bloggers from the UK.  If you have a minute, potter over  to her page, again you will not be disappointed!

Also from the UK is Caz, the author of Invisibly Me.  For a quick glimpse at her personality, check out her post, This and That.  As with most invisible illnesses, you wouldn’t know that anything is “wrong” with Caz, by looking at her, but she takes this one step further by sharing tips on how she continues to fight and rise above the trials she faces.  I especially like her post, What my invisible illness(es) have taught me. If you have another moment, (while you are in the UK :P) take a few steps over to her page.  About once a month she will share frugal finds for things she has found that help beat the heat and work on relaxation.

While I’m taking you around the world (well yah the internet is) I’d like to take a moment to visit Vancouver and talk about Amanda from Walk a Myelin* My shoes Not only does Amanda talk about the realities of living with Chronic Illness on her blog, but she is in the process of writing a book, and often talks about the other side ( caregivers and support people for those of us living with an invisible or chronic illness). To keep in line with the subject I wrote about earlier with being newly diagnosed, I would like to share this post written by Amanda as a place to start.

It is so easy to fall in with “the bad crowd” of people living with chronic illness.  By “bad crowd”, I don’t mean bad people, I mean people that spend more time succumbing to  their diagnosis and limitations than they do focusing on the positives in their life or are resigned to let the disease consume them.  (I think we may all go there from time to time.) Personally, I find it so much more helpful to spend time with people that while maybe struggling, continue to fight each day.

I hope you can take some time to visit the above mentioned websites, and that you find them as helpful as I do!

I have showed you mine, will you show me yours?

Do you have any websites or bloggers that you follow that share tips for dealing with chronic illness?  I would love to hear your thoughts

Maybe you can share some recommendations that you have?

 

I’m in a Hurry (and don’t know why)

I was talking with a friend the other day, and commented that I didn’t know how I had “made it” to 45.  She responded saying, “no shit, I don’t know how YOU did it either”.  (note she didn’t say WE, she said ME) That’s kind of sad don’t you think?  I mean, I have never fought in a war, saved someone from a burning building, or performed any other heroic act.  Yet, for most of my life I have lived in a constant state of fight or flight.  I have always raced to the next bullet point.  There was always something else that NEEDED to be done.

Have you ever heard the song, I’m in a Hurry by Alabama?  I swear they wrote it for me.

I’m tired.  I really am tired.

The thing is, I’m not done.  Far from it.  But I am learning that if I continue at the speed I have been going my whole life, I am going to burn out….quickly.

I have pretty much lived my life by this quote,

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!”

Hunter S. Thompson,

While I do still believe this, maybe I don’t have to be in such a hurry to get there?

Being pretty immobile for the last month, while waiting for my foot to heal, has been a blessing in disguise. As I said before, Patience has never been my strong suit, but for my foot to heal successfully I needed to practice some.  I have spent my “downtime” looking for OTHER ways I could heal and become stronger as well.

On the physical side I am going to start with physical therapy.  That’s it.  No big get out there and  walk a mile a day again.  Baby steps.

I have also been reading and researching various diet or lifestyle changes.  Although I do hope to lose weight, my goal is more to reduce the inflammation in my body to see if I can reduce the number of medications I take.

On the Mental Side, not only did I reread all my posts from this last year but, I also took the time to relive the excitement of my daughter’s wedding.  I allowed myself time to dream about all the things I want to do with my future grandchildren.  Most importantly, though I finally allowed myself to grieve all of the tragedies of last year.  This isn’t to say I am done grieving, more that I have slowed down enough to let myself feel the pain, I had been running from.

It’s kind of cool that even though I thought recovery time from surgery was going to be unbearable and a bunch of lost time I would have to make up for, instead it forced me to pace myself, and I was still very productive.

I’m a work in progress! 🙂

S L O W L Y

but getting stronger every day!

 

 

 

Makes you wonder, “Who’s the Boss?”

“Kind of makes you wonder, who the boss is here, doesn’t it?” This was the last thing my neurologist said to my son in law as we left his office on Thursday.  You see, being on the MS drug Tysabri, requires me to perform three actions each year to remain on the drug.   I believe the three things I am required to do are CYA (cover your ass) for the doctors and drug company, though they present it as for my safety….shrug

A little bit of the back story here.  When Tysabri first came out on the market, it had to be recalled twice because the risks outweighed the potential benefits.  (it killed people)  Ok while it didn’t kill people itself, it caused some to develop PML (Progressive multifocal leukoencephalopathy (PML) is a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).) which did kill people.   Either way it had to go.

Back on the Market

I began the drug shortly after it was released the 3rd time.  (YAH sign me up?!?!?)  SMH, actually for me, the risks were nothing in comparison to the potential gains. I was going downhill fast.  If you would like to read about how/why I started Tysabri, the first post of the “series” can be found here.

When they released the drug for the 3rd time, doctors had to require patients to meet the following conditions each year to remain on the drug.  The first is that they have to have an MRI of their brain yearly to look for signs of PML.  The second is that they have to have blood tests to determine if they are positive or negative for the JC virus.  Finally, they have to see their neurologist at least once a year to be reminded of the risks, and that the longer you are on Tysabri, the more likely it is that you will develop PML.

Having completed the first two requirements this summer, meant that I needed to see my neuro.  Not an easy feat considering I still can’t drive and his office is 2 hours away in Chicago.  Thankfully, my son in law said he would take me and spend the day with me.  (I really am blessed)

Z arrived right on time to pick me up.  During the two hour drive to the city, we discussed (debated) the pros and cons of Technology.  I will write more about that another day though.  Basically, I agreed to let him tell me about some apps that may make things easier for me, if he agreed to let me play devils advocate about the potential risks.  I think we both learned somethings.

The wait to see my doc was short.  He came to the waiting area and said, “C’mon Grace follow me”.  He didn’t notice my boot until, he turned around to see how I was walking.  (nothing like a having the pressure of having someone judge your balance as you try to balance) smh  He asked, “What happened now?”.  I briefly told him, he shook his head, and we entered the exam room.  We all sat down, and he said, “I was surprised to see you on the schedule, I never see you unless something is really wrong.  What’s going on?”  I chuckled, “just doing the yearly thing.”

First we reviewed the MRI of my brain.  There were no real changes to report, other than a little bit of atrophy and brain shrinkage.  (this also happens as we age, and was nothing major)  I did tell him about the newer symptom of “spins”, but only that I wanted him to put it in my chart, nothing else at this time.  He asked if I wanted to check disease progression in my spine with MRI.  (most of my lesions ARE in my spine)  I declined.

Next were the JCV test results.  The results were indeterminate.  (not negative or positive, literally indeterminate)  ok?  NEXT?

Doc: “You don’t want to talk about switching medications?”

Grace: Nope!  Thanks though

Doc:  “you do know that there is a new drug out  called OCEVERUS?”

Grace: Yep!

He began to shake his head again.  So I pulled the pamphlet out of my purse, and said listen Doc…let me be honest with you…. “I’m aware of the drug and the benefit of only having to have an infusion 2x a year, however at this time I’m just watching”.  I continued with:

  1.  I’ve done my stint as a guinea pig in the clinical trials for Botox
  2. It’s still too new, and carries the same risks as Tysabri.
  3. Basically the amount of time I “lose” getting this drug is the same amount I lose getting Tysabri ( Oceverus 2x a year 8 hrs each time vs.  Tysabri 12-13 x times a year 2 hours at a time)  Besides, I have a port in my chest that has to be flushed every thirty days regardless of whether or not it’s used, so it would be the same
  4. I also explained that I used my Tysabri infusion to meet my Medicaid spendown each month (but more on that another time)

He asked if the surgeon was going to send me to physical therapy after the boot came off.  I think I surprised him when I not only agreed to use a wheeled walker, (if Medicare will cover it of course) but that I would also like to go the PT, not only to aid my foot in healing, but to help with my balance and gait issues.  I asked HIM to write the prescription for both (pt and the walker) knowing that the likeliness of insurance covering both would be increased if they were given more reasons to approve it, (gait, balance issues, strengthening etc) than just “to aid in post op recovery”.  Isn’t it sad that it’s all a “game”?  Fortunately? for me I’ve been playing a long time.  SMH  We shall see.

Before I left, I did ask him for his opinion on the  various “diets” that are out there and how they may affect MS.  I know that I am not easy to “work with” sometimes, but that doesn’t mean I don’t want to do everything I can to fight this monster.  I just don’t believe that taking more drugs is the way to do it.

The diets I mentioned were the Wahl’s protocol, Paleo, and the Ketogenic diet.  I am not sure which if any I will follow, but I am in the process of learning about all three.  I have to admit that even a simple reduction in carbs and the addition of colored veggies to my to my normal SEE FOOD (see food and eat it) diet would be a good place to start.

Before we got up to leave, the doctor asked me if I would be willing to talk to other patients with MS.  I told him I do, all the time.  He was inquiring in more of a professional  capacity to which I responded that I was happy to  anytime, if he wanted to give someone my name and number, but never representing the hospital or his office.  (My use of the F bombs would disqualify me from that position.)

In closing,

The answer to the question of who is the boss…. I am!

It’s my body, my right, and my choice.

I am very fortunate to have a doctor that understands my feeling on this.  He also knows that while I do take some, I hate taking medications of any kind, and am always very reluctant to call, so when I do, he gives me priority.  I hope that if you are dealing with MS, or another chronic illness that you have found a doctor that is willing listen to and respects your opinions as well.

*The featured image is the inside of my daughter’s Beast for work….but doesn’t it make you wonder who is in control, or responsible?