Conflicting Emotions

Have you ever felt emotions that were complete polar opposites at the exact same time?

Last week, I wrote  One Step forward, two steps back.   I saw the surgeon this morning.  I should be happy that he was able to see me so quickly, and that they will be getting me in for surgery soonish.  I AM happy…kind of.

BUT, I am also pissed off.  I’m mad at the doctor who dismissed my foot pain and swelling as gout, but I’m even more upset with myself for letting him.  I should have fought harder for myself.  Three weeks have passed since my original visit to the doctor,. Three weeks before I couldn’t handle the pain anymore, and went to immediate care.  THREE weeks more damage to my foot because I continued to walk on it.  and NOW surgery.

The doctor is trying to get me in for surgery this week, but I have Medicare for insurance, and they don’t do anything quickly, so maybe not until next week.  I suppose I am to blame for this too, since I refuse to take pain meds, it can’t hurt that bad??!?!?!??!   I don’t refuse pain meds because I have a high pain tolerance, I refuse them because even one norco binds me up for at least a week and the mood swings are scary…. In hindsight, I will ask for them anyway.

While on the subject of being angry.  I am also mad that I bought another pack of cigarettes.  No one forced me to do that, and I know that recovering from surgery will take longer if I continue to smoke, yet I did it anyway……I have thrown the pack out 3x only to dig it back out of the trash….yes disgusting I know……

But did I mention yah surgery?…..smh

One step forward, two steps back

Do you ever feel like for every step you take forward, you take two backwards?  That is the best I can say to describe the events happening in my life right now.  I did think of using a hurricane or other storm as an example, but while those things ONLY cause disaster the things happening in my life are only causing me grief, and I haven’t given up just yet.  So what’s been happening here….

Instead of re-writing, or copying and pasting things from previous posts, I am going to add links to my previous posts if you want the back story.

Walking a minimum of 4000 steps a day

On July 13th, in the post let’s get moving.  I talked about making it a point to walk everyday to increase my endurance, strength, and stamina, even though I am afraid to walk alone and have had some pretty bad experiences.  The positives are that I have finally reached my goal of walking for a full mile at a time, and have had some days that I have reached more than 8000 steps (not at one time though).  I was doing good with the whole weight loss thing, ( I haven’t written about that yet), until Birthday week hit….yah cake?  My neighbor (who works nights) even started setting an alarm to wake up at 8 am and walk with me everyday.  I bought a rollator walker to help with my balance, which I used in the evenings to try to get a few more steps in.

One day after getting lots of steps in, I came home, took off my shoe and saw this…foot oww

Awww, shit. I had broken my foot a couple years ago, and had attributed the pain to “an old sports injury”.  The fact that it was so discolored told me that I couldn’t ignore it any longer.  I reluctantly called the podiatrist I had been referred to in the past.  I don’t want to be “one of those people” that claim that doctors treat patients without insurance differently, but after the office visit I have to be.

The doctor physically examined my foot, said it felt warm to the touch and was obviously very inflamed, but since I hadn’t suffered an actual injury “this time” he was going to call it GOUT.

reallyHe sent me to the lab for a uric acid test, gave me a prescription for indomethacin, and told me to keep ice on it for a a couple days, then to start doing stretches for it.

NO Xrays?!?!?!?  That’s it?!?!?!  Not even an order to stay off of it…..

I went to the lab and had the uric acid test done, which came back as negative for gout.  Ya think?!?!  I did not take the prescription because NSAIDS, cause my blood pressure to go through the roof, and make me sick to my stomach.  I instead have been living on advil and tylenol.  (also not good, but the pain got to be pretty bad even at rest).

Yesterday, I broke down and went to an immediate care center.  The first step while there was to do XRAYS.

GUESS WHAT

It’s broken AGAIN!!!!  Is anyone really surprised?

So now I am back in a boot, yah that it’s a short boot this time, but a boot nonetheless.  I have an appointment Monday to see a surgeon. If I end up spending any real time in the boot again, I will be ordering an “Even Up” from Amazon this time.

I don’t have the time or the patience to figure out why the link to amazon isn’t working, but if you want to see what I am talking about please click the link below or google “even up”.

<a href=”https://www.amazon.com/Procare-EvenUp-Shoe-Balancer-Small/dp/B00YBP7N9Q/ref=as_li_ss_il?ie=UTF8&qid=1534367535&sr=8-1-spons&keywords=even+up+womens+shoe+balancer+for+women&th=1&linkCode=li2&tag=gracefullnot-20&linkId=b708949e806607bddd4b94e1c2521092&language=en_US&#8221; target=”_blank”><img border=”0″ src=”//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=B00YBP7N9Q&Format=_SL160_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=gracefullnot-20&language=en_US” ></a><img src=”https://ir-na.amazon-adsystem.com/e/ir?t=gracefullnot-20&language=en_US&l=li2&o=1&a=B00YBP7N9Q&#8221; width=”1″ height=”1″ border=”0″ alt=”” style=”border:none !important; margin:0px !important;” />

Basically, it’s something you attach to your other shoe to help not cause further injury by walking “crooked” or unevenly when you are stuck in a cast. IMO well worth the $20.00.

When I began writing today, I had envisioned telling you about all the fun ( said very sarcastically) I had trying to switch to self hosted, and updating you on Me and my shadow, but this post is pretty lengthy as it is so I will write separate posts….later.

It’s good to be Back…. I have missed interacting with everyone and feel like I have alot of catching up to do.

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)

tetris in a car 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!!!

Guest Blog for Newly Diagnosed!

MS WarriorI 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 NOTMS Warrior 2 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 fed3f7a42808627b5d83970c7ebe974c--multiple-sclerosis-awareness-curestopped 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 fight for a curetaking 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 flare upanother 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 stock-photo-concept-conceptual-mental-stress-at-workplace-or-job-abstract-round-word-cloud-isolated-on-452180749October, 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!

love

Always, Alyssa

Newly Diagnosed with MS

I have tried so many times to write a blog or make a video for someone that is newly diagnosed with MS,   I write 1000’s of words, then I reread what I have written, only to realize the advice doesn’t apply to everyone.

The reason for this is that MS is not a “one size fits all” type of disease.  I don’t mean because there are 4 different types of MS, I mean because it affects every single person differently! EVERY SINGLE ONE!

Not only will MS affect YOU differently than it affects your cousin’s sister’s uncle’s aunt that has MS, but any treatments YOU might try will affect YOU differently as well.

I have made this video, more than anything so that you realize YOU ARE NOT ALONE!  As you wade through information on Dr. Google, and hear stories from other people PLEASE, PLEASE, PLEASE keep in mind that people are only sharing THEIR STORIES.  (and negativity breeds negativity)

Some people will tell you to read everything you possibly can about MS.  (Dr. google is a scary monster) Others may tell you to join support groups, Facebook groups, eat an all natural diet, take this drug or that drug.  My cousin swears that “…..” works….BUT you need to pick what works for you.

MS is unpredictable.  There is good and bad information to be obtained from the internet and social media.  If you keep an open mind and are aware of the possibilities, you only prepare yourself for the worst case scenario. You can’t live your life in fear of the unknown, THAT alone can paralyze you.

Below is another video in which I talk about not only how I was diagnosed, but also how I “met MS”.

My story- being diagnosed with MS

So my advice to EVERYONE that has been newly diagnosed with MS or another chronic illness is to:

  1. Take a deep breath
  2. Take another one
  3. Acknowledge that while this may suck, there are worse things in the world
  4. Learn everything you can about your condition, BUT also pay attention to the source ( even if you learn what NOT to do)
  5. Advocate for yourself and do what works for YOU
  6. They call it “practicing medicine” for a reason. Get 2nd and 3rd opinions.
  7. Surround yourself with positive people
  8. Learn to laugh at yourself

As I mentioned at the beginning, it feels like a whole different lifetime since I was diagnosed, (and it has only been 20 years) New ideas and treatments are coming out and being discovered every day.  Never give up!

If you are looking for a place to start your research, here is a link to the National MS Society.

If you need to talk reach out, send me a message, ask tons of questions. In the upcoming week, I have asked 3 other bloggers with MS to share their stories on this page, and or to share their advice about what does and doesn’t work.

This Best of luck to you on this journey!