Help! I don’t know how to be a “GIRL”

Ok, Ok, you all know that I have the X chromosomes… (there are two right?)

I was born a female.  I have not had any surgeries or anything like that to change that fact, nor do I want to.  (well except for this one time, when I had a hysterectomy... medically necessary NOT elective) But I am struggling with how a “girl” is supposed to look, act, dress etc.  You see, I’ve never actually TRIED to “fit in”,  BUT now…

Thing ONE is getting Married in March!!!

I am THE MOTHER OF THE BRIDE…. who knew that was such a thing?  I mean I know I’m her mother, but I apparently don’t just get to sit there and watch my kiddo get married,  I actually have to SHOW UP, (like dress up and say stuff and…..whoa)….

When she was a little girl and it was just the two of us, I envisioned being the one to walk her down the aisle, and that’s as far as it ever went.  I never thought about “giving her away” or her father walking her down the aisle.  I am glad that Einstein is doing that part, since I don’t think I could say the words when asked, “who gives this woman?”

DRESSing up to SHOW UP

I guess it makes sense that the first part for me then is choosing a Dress, since I was informed that I can NOT wear sweats and a Tshirt.  I was also TOLD that I could not wear a Tuxedo as I have in 2 previous weddings.  DON’T JUDGE!!! (I had “stereotypical male roles” as an Usher in one, and a Best Man in the other, so it was fitting, AND cheaper.) 😛

Picking out a mother of the Bride Dress

Thing 1 and her bridesmaids told me I was not allowed to wear a tent, or an old matronly type dress either, because I am not OLD….. well THAT got my attention….DO TELL!!!!  So I agreed to wear a dress if they helped me pick one.  We went to David’s Bridal and the fitting person asked me what kind of a dress I would like….um….well…. um… I repeated the bridesmaids directives and added a few of my own:

  1. The dress could NOT be matronly
  2. It had to be the Color Plum (to compliment the bridal party)
  3. The dress had to be long so I could “hide my bag of pee” if I needed it that day (and to hide my tennis shoes, if I could get away with wearing those)
  4. I get hot very easily, so no long sleeves

The “fitter person” took my measurements, suggested a size, and the bridesmaids all took off running to find the “perfect dress”.  SO Many dresses…..smh  I was exhausted by the time I had tried them all on, so I told them to vote and pick one.  They did.  (and I spent a boat load of money on a dress)

Time for shoes!

My kiddo, told me I could wear my tennis shoes under my dress because they are custom fit with orthotics to keep me upright…so for the most part that is covered. ( I do own a nice pair of black flats for pictures so that part is covered too)…. I think I’m good to go…..but

What about your Hair and Make up?

Yes I have hair, no I don’t own makeup.  Next?……(apparently it is not that simple)

Hiring someone to do your hair and makeup for a wedding

My daughter presented me with 3 options for having my hair and make- up done.  I am pretty sure she doesn’t really care how I show up as long as I show up, but she wanted me to feel included.  She told me there are 3 packages available for make up (hair is included)

  1. Regular make up
  2. Airbrush makeup
  3. “24 hour” makeup.

I honestly don’t know what any of that means and all would be a change for me, but ok here goes.  So, I called the place that she hired to do everyone’s hair and make up and asked them if they have something like SHELLAC that they could apply over whatever they decide to do to my face….they laughedI WAS SERIOUS!!!

I expect to bawl like a baby, not bad tears, but happy ones, but lots of tears nonetheless.  And I am a horrible crier…

making crying beautifulI look NOTHING like Jennifer Love Hewitt in Ghost Whisper who looks more beautiful with each tear she sheds.

So please just make it water/tear proof.

 

I even enlisted Tiara from DGGYST to ask for make up tips.  (she really is kind, even in real life…not just “celebrity mode”) and she didn’t laugh at me when I asked for help.

Choosing Bridal Jewelry

Now I am stuck on Jewelry/accessories.  How the hell do you chose those?  Do they have to be the color of the dress, or do you pick something for the style of the dress?  Since I don’t really own any jewelry, I suppose I should buy something that I can wear again.  (like maybe when thing 2 gets married)

I do have pierced ears, but only because the holes never closed from when I was 12 and pierced my own ears to shock my parents.  So I was thinking maybe matching earrings and a necklace?…I am really stuck though.

I am afraid to ask anyone I know in real life to go shopping with me, for fear that they will try to talk me into a full wardrobe makeover….and then our friendship would have to end….and well let’s just say it’s better that I don’t ask them.

So here I am asking for help.  Any advice on how to Choose jewelry?  I would like to draw attention AWAY from my port.  (I know I am very self critical, I am working on that.)  I am excited about the Wedding, and I am getting excited about dressing up, it’s just been so long since I have, that I have forgotten “how to be a girl”.

 

 

 

My decision to start Tysabri part 4 of 5

I began receiving Tysabri at the end of 2009, or the beginning of 2010. I’m not sure which, but I will try to remember to ask when I go in for my infusion next month.

In the beginning, I was terrified that I was going to be that 1 in 1000 that would “catch” PML. (Some days I feel that I would have no luck at all, if not for bad luck.) I was also terrified of the needles;  every doctor, nurse, tech, vampire, etc that pokes me with a needle blows my veins, and bruises me enough to make others question if I am abused. Thankfully, I have a port now!!

 

Every 4 weeks, I would have a full day of “adventure” to get my infusion. (even though the infusion only takes 2 hours.)  The adventure included: leaving my house at 8 am, driving 1 1/2 hours into the city, paying an exorbitant amount for parking, and making what felt like a 2 mile trek to the infusion room, all before getting to sit in the waiting room to check in for my infusion. After following the drug company’s protocol for checking in, I would have a 20 minute panic attack while the nurse looked for and blew my veins. (Did I mention YAH PORT?!?!  Yeah, 3 years before I finally got one! I’m a slow learner.)

Next, came the actual infusion itself.  This part was a piece of cake, all I had to do was lay or sit there for 2 hours while I received the medication intravenously.  Ok, it was a little more complicated than that.  I had to go to the restroom 2-3 times because of all the fluids I drank before hand to make finding my veins easier, in addition to the hours’ worth of fluids they pump in your body with the medication.  It was still relatively painless.  I kept telling myself, at least it was only one time per month instead of getting sick every other night, like I did while taking another MS drug, Betaseron.  Once I made the long drive back home, (hopefully missing rush hour) I could sleep the remainder of the day away if I needed to, and I frequently did. To be honest, at times, I also worried if the stress the whole ordeal caused me would make me have another ms flare up.

The only “reactions” I experienced from receiving Tysabri were headaches, and a feeling of sleepiness which until the last few years, I assumed were from the “adventure” itself. 

Tysabri didn’t automatically fix me.  I didn’t get a big burst of energy or start dancing a jig.  In fact, the first change was almost unnoticeable. After about 6 months, it dawned on me that I hadn’t needed steroids, or been hospitalized for a new flare up in several months.  Once I started to wrap my head around the fact that MS wasn’t running me over like a train, I began to relax a little bit. I started to commit myself to learning more about Tysabri, infusion centers, and what else I might try to do to FIGHT BACK against the MONSTER that had been winning the battle with my body and soul.

I have a very difficult time putting my experiences with receiving the infusion over the last 8 years chronological order, or giving exact dates so I’m not going to try.  I will, however; give a bit of a summary.

I have had 2 relapses in 8 years, and they were minor in comparison to the ones in the past. My depression has improved.  I still battle it every day, but I have a more positive outlook on life than I did 8 years ago. While Tysabri DOES NOT treat depression, I do believe a lot of my outlook has changed because I am not experiencing relapse after relapse or fast progression. I can walk about ½ mile continuously on a treadmill.  (More or less depending on the time of day what other activities I have done and the temperature in the house)  I have lost 60+ pounds and have started MOVING more.  I have done a lot of physical therapy, including horseback riding for 3 years.  I gave up soda.  I believe all of those things have helped me become a better “MS Warrior”.

I have mentioned before that I am not trying to “sell you” on Tysabri, or to tell you that it “fixed” me.  I am still “broken”.  BUT, it did give me hope.

Whatever path you decide to take on your ms journey (no it’s not a vacation, but it is a long road) I wish you the best and encourage you to fight harder than you think you can.  I truly didn’t know how hard I could fight until fighting was ALL I could do.

I will work on trying to finish the last part of “this story” later this week, but it has taken me more time to write this than I thought it would, and I need to keep moving!!!!