A Trailer “fell in my lap”

Ok not literally, but YAH I have a “Free trailer”

I have mentioned before that I grew up “in the sticks”, and I have also alluded to the fact that I was kind of raised as a tom boy.  I know how to drive a tractor, trailer, dirt bikes, 3 wheelers, and even a skid loader.  My father owns many of these items, but in his “old age” I think he has “forgotten” how to use them.  I am being very sarcastic here, because he still uses them all the time, except for in the winter.  For some silly reason, he no longer takes his truck off road, he barely takes it out in the winter for fear of rust….SMH (more sarcasm) AND when he bought his newest truck, he bought one with only a 6 foot bed. 

(The guy who raised me telling me that if you couldn’t fit a full sheet of drywall or plywood in the back of a truck it wasn’t a REAL Truck, bought a truck with a 6 foot bed!!!!!!!!) SMH  He even owns two plows, but doesn’t drive his “new baby” in the winter?!?!??!?!

Figuring I still had a few more weeks of winter before I had access to a truck and trailer, and the ‘silly doctor’s’ “don’t lift 15 lbs for 2 weeks limit” I’d been packing a little here and a little there to try to respect the doctor’s restriction, so I had stacks and stacks of rubbermaid totes all over Einstein’s house. ( a few in this room and a few in that room)  but then a trailer “fell in my lap”….how could I resist?!?!?

Thing two and her boyfriend “D” were using D’s truck with my father’s trailer to move a couple motorcycles and I “conned” D into giving me a couple hours of his time in exchange for homemade lasagna.  The ‘Catch’ was, I only had the trailer and D’s help for a couple hours…. hurry hurry hurry.

OK PRIORITIZE, what goes first?

• Air mattress already set up at the new place…so don’t worry about the bed
• You’ve got some clothes and essentials there so don’t bother with more ( besides they will fit in your car)
• The most important non negotiable material things that I need a trailer for are my Grandma’s kitchen table and my desk  (both had to be disassembled though)  So I decided to start there.  I went into the office…and froze… OMG this is real.

Anxiety Can Paralyze You

I immediately started having doubts.  “Were things really that bad here?”  “So much work, for so many years….shouldn’t I try harder?” It didn’t help that Einstein has been the man I fell in love with for the last couple weeks since I said I was moving, he even tried to take care of me post surgery and cooked me dinner?!??! (ftr this has NEVER happened) He helped me with a 3 d printer design and and and….. oh no….NOT AGAIN….. You’ve got this Grace.  So I froze. and then I stopped breathing….wtf?!?!?  I was just about to walk out of the office making excuses that I should follow doctors orders blah blah blah and then not one but two familiar faces popped up on messenger….”Just checking on you grace.”  Suddenly I could breathe again. (This anxiety shit really is no joke.)

The Therapeutic Power of Music

I selected random play for the music on my phone and Kesha “Praying” came on.  (  I am in no way religious, although maybe it would be helpful if I was, I am not.  It doesn’t change the fact that the song is incredible and something I will continue to listen to)  If you have a second, the link is for her official video, and for me it hits home.  The next song was “New Rules” by Dua Lipa, followed by “Not meant to be” by Theory of a Deadman.  Before I knew it the desk was not only disassembled, but I had dragged it out of the “office” to the front door.  I set up a card table where the desk used to be and reconnected my computer.  The legs were removed from my Grandma’s table ( I couldn’t dream of moving that by myself though, WAY TOO HEAVY)  But I did it!

One Step at a Time

 

 

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The Finale is really only the beginning

As I sat trying to figure out how I was going to move ALL of my belongings from a however many foot ranch with a full basement to a one bedroom “apartment” ( kind of) I felt like a teenager again.  My coffee pot is set up in the bathroom (to try to conserve space) but yah closer to where my desk will be set up?  I am trying to look at this as a fresh start where anything is possible.  Sure it’s scary, most new things are.

I am/was struggling with what material things need to come with me and which ones will go to storage.  But yah that will help me focus on what is most important to me?

The photo albums do have to come!

Actually I think I am going to start scrapbooking again as a healing tool.  Originally,  I started scrap booking ( more picture taking with LOTS of  journaling) for my children. In addition to being diagnosed with MS at 26, I was also diagnosed with cervical cancer AND my kidneys were being damaged because of my inability to urinate.  I was afraid that I was dying and no one would tell them the “whole story” about their mother.  I knew people would share the pedestal stories with them, but I also wanted them to know the one’s that I am not proud of, and about the personal struggles I faced.

I started making and filling photo albums, not only about my life but albums for each of my girls highlighting their birthdays, sports, Christmas parties, school events etc….who knew that I would end up with so many?!?!?!

I have scanned  most of the albums to disk and tried to give the actual books to my daughters, now that they have homes of their own, but they don’t want to store them.  They also will not let me throw them away….smh… Whoever said raising girls was easy, can kiss my ass!!!!!

To be honest, I don’t think I could throw them out either.

Ok so the photo albums are coming with me.  (This is only one load in the back of my car.)  The final deciding factor to bring them with though, is so that they will serve as a visual reminder for myself of all the things I have survived, and all of the good times I have had in my life for the days that I don’t feel strong enough.

 

Thank you for your support

Earlier this week, I hope you saw the wonderful guest posts by Steve Markesich @ MSich Chronicles, Alyssa @ fightmsdaily, and Alex @ MS with Ms Alex!  If you missed their posts or have not seen their blogs, please take a minute to check them out!  These people are not only positive inspirations to those of us living with Multiple Sclerosis, but for me they have all become friends outside of the blogging world.  Alex and Steve have heard my tears, and offered their support and encouragement on numerous occasions.  Alyssa sends me frequent messages ‘just checking in’.  It is SO helpful to know that you are not alone when you are struggling!!!!!

Hope for the best, but plan for the worst

Something that MS has taught me is to try to plan ahead…to prepare for the worst, while hoping for the best.  I knew that this last week was going to be difficult for me: recovering from my own surgery, taking care of my father while he recovered from his surgery (which was cancelled and rescheduled), packing and moving, slump week, etc etc, so I reached out to my friends and asked them for “help”.

Asking for help is so hard

Even when I write about “not fun” or painful subjects, I try to keep things “humorous”. I didn’t want to feel as if I HAD to write something, so as hard as it is to ask for help, I am glad I did. (trust me if you were in my head with all the mood swings etc , you would block me, ignore me, or otherwise, cut me out of your life, so I decided to “remain silent”)   I won’t claim that  having my friends guest blog,  helped me FOCUS, but it did allow me time to try to wrap my head around everything that is happening, and to start getting “shit” done.

Better than I hoped

While I knew that my fellow bloggers would not disappoint with their pieces, I was surprised at the things that I learned from their writings.  I really wish I had Steve’s letter to himself (pre-Ms) when I was diagnosed.  It really is great advice!!!!! Alyssa’s Guest blog about the things she has tried for MS reminded me that we are all different, and that MS really is a snowflake disease.  (I’ve said it before, but it really hit home)  You have to fight for yourself, and what works for me, may not work for you.  Finally Alex’s post called the do’s and dont’s of MS, in which she shares how her “attitude” and sense of humor keep her going.  Alex is not only determined not to let MS define her, but she kicks ass for everyone around her as well.

THANK YOU again my friends

Thank you! Not only for taking the time to share on my blog, but for making a place for me in your lives, and helping me get through this rough patch.  I really did accomplish a lot, the worst events of the week were the alone time (when I was left alone with my thoughts)

BUT each day, I filled my car from floor to ceiling (hindsight says that was probably not the smartest way) and drove to my “new” place and unloaded my car.  Some days I even managed a second trip.

To “keep things interesting”, let me add that this move is  “double duty”.  Before I could move anything in, I had to begin emptying and cleaning the things that were left behind including the the ceramic tiles and tub from a bathroom.  But YAH, I am making progress!!!

The Do’s and Dont’s Of MS

I start this with entry with the do’s and don’ts of MS. Pretty serious shit right? Not really I’m just kidding. I know I’m an ass, but thats my coping technique .  Everyone has their own way of dealing. Mine is by being a jokester. Ya know putting a funny spin on a shitty disease is pretty therapeutic. So here I go…..

There aren’t any do’s and don’ts of MS. Everyone’s MS is different. I guess I should start with a little history and then go on to my way of dealing with MS the gift that keeps giving.

I was 34, I was a realtor at that point in my life. The market was at peak and I was cleaning up. Kicking ass and taking numbers. My boys was 14 and 12. I was married to the man of my dreams. I was walking in tall cotton as they say in the South.

Then suddenly one day my right arm started going numb. Hmmmmm curious. I chalked it up to a heavy purse. I’m known for carrying anything and everything in my big old purse.  So I empty the purse and cut it down to the bare minimum. I cut it down to make up, money and my handi dandy knife. After all what hispanic gal would go about her day without a blade handy. Just kidding it was a Swiss army knife. Problem solved right?  So I thought. It didn’t help. I went to my GP because the numbness was spreading. I also had a rash at the base of my scalp. A couple of weeks prior I had gotten a tetanus shot for a cut and experienced flu like symptoms. So my GP sent me to a neurologist. That neuro thought I had a basal migraine. I wound up finding another Neuro after several months of no real answers and a ton of crappy meds that didn’t help. By that time I was completely dead on my right side and I was dragging my right leg. The new neuro did the necessary test and came back with a diagnosis of MS.

I knew nothing of this disease. I was scared shitless!!!! As I’m sure most of you have been. Long story short I educated myself. Stayed on top of the different research etc. In other words I took as much control as I possibly could. The other thing I did was I didn’t wallow in self pity. I pretended for many years to be A ok. Ya know what? I was A ok to a certain degree. But I wasn’t completely honest with family and friends. I didn’t let them see the struggle for what it was. In my case it kind of hurt me because no one really knew how to deal with me as my disease progressed. My bit of advice on this subject is tell people the truth. Tell them the struggle when you need to but don’t, I repeat don’t get lost in this disease. Whatever you do don’t let this shit consume you!!! Speak your piece and then move on.

I went to different MS meet ups etc. These functions depressed the shit out of me. It was a bunch of really sick people gathering to complain. Both the women and the men appeared to have lost all will to live. I was like WTH? I’m not like these people. I still put on my make up, did my hair and dressed snazzy. I refused to let MS steal my sparkle and shine. Whatever you do being a guy or gal continue doing the stuff you did prior to MS diagnosis. If you did your hair and make up before please continue to do so. If you played Basket ball, golf or other sports prior to dx please continue to do those things on good days if you can. Don’t fall into the I’m too sick to do anything. I don’t primp or play golf on bad days but you can damn sure bet on a good day I’m doing all the things I love. 

Don’t lose YOU behind being sick. YOU ARE MORE THAN MS!!!!!!

With all that being said I also encourage a healthy diet and exercise. I don’t recommend any particular diet because in my case Ive tried many different MS diets. None have worked for me. I still progressed. Some people I know do certain diets and manage quite well but in my opinion there is no cure diet. I do agree that what we put in our body is important but to say a diet cured someone of MS is ridiculous. I personally think that people that claim they have been cured of MS from a diet probably have a mild form of the disease. But thats my opinion. Do as you wish. We all need to do our own thing to see what’s a good fit.

Another piece of advice is make sure you find a dr. that you feel comfortable with. I’ve been through several. Don’t let a dr. bully you. Your fears are valid. Your symptoms are real. Don’t let anyone make you feel crazy just because they’re not familiar with your particular situation. Always remember you are paying them NOT the other way around! Be your own patient advocate. You have a mouth and a voice a deserve to be heard!

My last bit of advice is to stay as positive as you possibly can. Always remember it can always be worse. Don’t concentrate on what might happen, concentrate on whats going on right now. Life is full of what if’s that never actually happen. My dr’s have told me over and over Id be in a wheelchair years ago. Even the last dr. I left insisted i’d be in a wheelchair in a couple of years. I’m not! I do go between a walker and a cane. But I will rehab again just like I have over the past 14 yrs. I still walk, garden and play golf when I feel up to it. I’m not letting some dr. dictate how I view my disease.

I do admit my life has changed drastically, I had to leave a career I loved and lost the ability to drive for the most part. But i’ll be damned if I lose ME. I’m still Alex the cussing, silly, life of the party. I’ve learned to take things slower and rest when need be.But I never lost ME. Please don’t lose you. We’re all here for a reason. Make it count!

Some get angry because of this illness. I’ve been sad and stressed and disgusted with my progression over the years, but at the end of the day I’m grateful for the true appreciation I have for the little things. What gave me this appreciation you ask? MS thats what gave me this appreciation. People walk through life perfectly healthy and don’t have the appreciation I have for the little things. You can make your life a positive experience or a negative one. That is purely up to you. Appreciate what you do have, there is someone out there wishing they had what you have.

 

Guest Blog for Newly Diagnosed!

I feel truly honored to be doing this guest blog for my dear sweet friend Grace. Grace is an absolutely phenomenal person and I am so thankful that I have had the chance to get to know her. Grace inspires me every day with how humble and strong she is! I know that she will disagree with me on this, but that just goes to show how modest she really is!

Are you a newly diagnosed MS Warrior? I say MS Warrior because all of us that have MS are so incredibly strong and fiercely tackle our illness! I was diagnosed with MS almost 18 years ago when I was just barely 19 years old. The events of this day are embedded into my mind forever. I remember being absolutely terrified because I had only known one person that had MS, my biological father’s wife, so NO relation at all and I guess it is clear that we are not close. She was of course a lot older than me, but she was in a wheelchair so I immediately thought that was going to be me. In my childlike mind I went from being diagnosed, to being wheelchair bound and then to death! But, now that I am older and wiser I know all those thoughts were NOT true at all! Like I said, I have been living with this illness for 18 years and I am still walking and living life to the fullest!

My best advice to anyone that has been recently diagnosed or even those that have been living with MS for years is do your own research! Yes, you should trust your doctor, but you also know your body way better than anyone else. The doctors can recommend what they think is the best course of action with medication, but you are the one that has to take it, so you need to feel 110% comfortable with the choice because it is ultimately your choice, not theirs!

I can give you a rundown of what I have taken and what I have dealt with, but this is just my opinion and my experiences only. In the big picture I am not a medical professional, but am a professional in my own body! All those years ago when I was first diagnosed there were not options for oral medications only injection types. So, being young and naïve, I listened to my doctor and started on Rebif. Rebif is a 3 times a week sub cue injection. It honestly was not the injection part that was hard for me, it was the burning sensation I felt when the medicine entered my body. It felt like I was injecting myself with a stream of fire! Also the side effects from Rebif caused me to have flu-like symptoms the following day, which was no fun. I did what was recommended and pre-medicated, but being the stubborn person I am did not understand why I had to take one medicine in order to take another medicine that was supposed to help me. I started missing doses regularly because of how it was making me feel and the bruises I had from the injections and then just decided to tell my doctor it was not working out for me and stopped it all together. I also ended up having more flare ups because I was not taking a disease modifying medication.

The next medication that was recommended to me was Tysabri. My doctor felt that Tysabri was still strong enough to keep my illness under control and I did not have to inject myself. Tysabri is a once a month infusion which really made me nervous, but I tried it anyways because I wanted my illness under control. For the two months I was on Tysabri I would be very sick for a few days afterwards unable to keep food down. I told my doctor that I could not continue taking something that caused me to be so sick and refused to go back for another infusion. I told y’all I am a very stubborn person, especially when it comes to what is best for my health. I am a little surprised I did not force my doctor into early retirement!

My doctor being the patient man he was talked to me about other options that were available for me. Luckily oral medicine was finally being released and we both agreed it was the best course of action for me. I would not have to inject myself with anything and I would not have to deal with infusions. I decided that Gilenya, which is a daily oral medicine, would be the best solution for me. We only ran into one very minor issue on Gilenya, my white blood cell count dropped to a very dangerous level, so instead of taking it daily, I would take it 3 times a week until my next blood test. Everything went very well on this plan and my next blood test came back great, so we increased it to four times a week. I have now been on Gilenya for 6 years now and went from taking it 4 times a week to daily and I am doing pretty well overall.

Although, last year in July I had so many people talking in my ear about what they thought was best for me that I stopped listening to my own thoughts, I guess you can say I was hearing too many voices! My husband thought that I had been on Gilenya for too long and needed to give my body a break because he remembered back when I first started it there was a protocol that said I should only be on it for 2 years and then get off of it for a short time, but be on something else. Now in his defense, I was having a lot of sinus issues and did some research on Gilenya’s website and found that there have been some cases of increased sinus troubles. I thought about this for so long and stressed myself to an extreme before deciding to try another oral medication. I did a lot of research on different medications before making the switch to Tecfidera. I went off of the Gilenya for one month to clear my system of it and went on Tecfidera, which is another oral form taken daily. I am not saying it was a bad decision, but I ended up having some serious issues. It was in October when I had the worst flare up I have had since being diagnosed. No one can say for sure if it was the stress I put myself through deciding to change medications or if it was the fact that Tecfidera was not strong enough for me. Well my doctor did tell me it was because the Tecfidera was not strong enough, but it was against her advice in the first place. Honestly, I do not have the best relationship with this doctor, my old that I trusted retired. After having a terrible MRI report, I decided to go back on Gilenya because it did so well for me for 6 years! Until there is a cure, I probably will not change medications again!

A very solid piece of advice I can give you is to avoid stress as much as you possibly can. I know it is hard to avoid stress because it happens to all of us, but stress is a HUGE trigger for flare ups. Honestly, I am giving you this advice because I am a walking talking stress case and it has caused me so many additional problems and pain! I don’t want to scare you anymore than you probably already are, but the flare up I already mention I had in October, was solely due to stress! All that stress could have and should have been avoided, but it was not because I allowed stress to consume me and I am still dealing with some issues almost five months later. It was a very harsh lesson to learn, but I already knew what stress could do to your body and I just let it get the best of me. I have found the best way to combat stress is to find a hobby that you enjoy! My hobbies that I truly do love include reading and writing; I just wish I had focused more on my hobbies than I did in October and less worrying about my illness.

I want you to know that you are not alone with this battle. There are so many people out there that understand your struggles and will support you! I am always here for you if you have any questions or need to someone to vent to. I started my own blog in July because I wanted to be able to raise awareness of MS but also offer support to those in need. My blog is https://wordpress.com/view/fightmsdaily.com. I am a very strong believer in positive thoughts create positive things in life. I do realize it is not always easy to think positive when you are scared, in pain or suffering, but that is where it helps to lean on someone else! I can also tell you that following my dear sweet friend Grace’s blog will be helpful to you. Grace is pretty amazing and has a tremendous amount of strength and courage!

Always, Alyssa