Monday, March 5, 2018

Allergies, MS- What's next?

Going to the Dr is a pain in the butt for any reason. Add having to list off the names of medications you take (and spell them), it becomes a 3 ring circus. What is that for? I have never heard of that? What is the dose? And my personal favorite- I can't find that in the system, could it be something different? I literally have a piece of paper that has my 7 prescriptions (and 2 as needed) written down. Then I have a drawer of "just in case" meds. Yes, that is truly a life of "Behind the Scenes". Every time something comes I fear the looks, the questions, the judgment. But I have been rather fortunate. Maybe its my attitude. I know shocker- right? I am quick to defer to the Dr anytime they want to recommend something. Case in point, my continued struggles with my chest, cough, sinuses. Going on week 5, following Dr.'s orders my husband woke me up after a night of pretty much no sleep, (at that point I had slept 30 minutes), to go get a chest x-ray. With pneumonia ruled out (thank God) the focus went back to my allergies. I swear, as the years have gone by I have become more and more sensitive to things, foods, pollen, etc. Having been to the allergy doctor and lit up like the 4th of July during testing, I really didn't want to just jump into shots. But after this past several weeks of misery, I'm over it. I just really hope that it will make a difference because I am not going to go through that only to be miserable. Wondering if I should call and just bite the bullet and start now? Or wait my "follow up" appointment at the end of the month and let them know, the meds were a total failure, I ended up at the Minute Clinic twice, and Urgent care once and a total of 7 prescriptions (1 the first visit, 2 the second, and 4 the 3rd) later, I am finally able to go the morning without a box of tissues or need a cough drop (or cough up phlegm- sorry). So while my cough syrup tastes like some sort of butterscotch rum "shot" mixture (glad I didn't go with the codeine one!!) I am glad I can work and not have people look at me as though HAZMAT might need to pay me a visit. -Maybe they should just to be on the safe side. Trust me I have sprayed enough Lysol at work that I am pretty sure I have napalmed every germ from here back to Pinellas. Can't be too careful. I guess my biggest issue is the shots... I was SO happy when I was able to stop taking shots for my MS. With muscle atrophy in my arms and legs, I am NOT looking forward to this. So yeah... For the record- I do NOT want anything NEXT! Well maybe to lost 10 pounds, but only if its healthy, I don't need to lose a 10lbs tumor and have that scare hang over me. Plus, I have enough scars! Unless I get a tummy tuck out of the deal- FORGET IT!! Hope you enjoy the little glances "Behind the scenes of MS" it isn't always pretty, but it's LIVING! And that's most important! Leave a comment, let me know your thoughts, experiences and what you have done to "get through"... Keep on being a warrior!

Thursday, March 1, 2018


The tears streams down my face faster than I could control. I felt like a complete total failure as the dentist confirmed what the hygienist said so matter of factly, as if it were no big deal. My broken filling had affected the bone around the tooth, and after 7 years of neglect, it was too late. The worst part, I had already planned it out. Cleaning this month, root canal and crown the following month. But as the tears flowed the dentist seemed to not understand my loss. But then he didn't understand why it had been over 7 years. He didn't realize that as a mother in those years I now have 2 kids that went through braces, 3 kids that had all 4 wisdom teeth out (2 that had 4 more), that I had my gallbladder removed. Or that sitting in a chair while they take a wire and use an xray to guide it to through your breast while talking to you and telling you everything will be fine- the wire helps guarantee they don't have to remove as much... Yeah, I did fix my other tooth when I couldn't take it anymore. I know, 10 years in the field and I was "that person". But I put everyone first. Made sure everyone got the glasses they needed. And yes, I know, I am blessed to have had an FSA account. But it was gone! And any time I needed it for my tooth... It was gone... I had to hope for the next year and pray my MS didn't take a turn for the worse or my meds didn't double in price. Tomorrow I am putting up a fight. It's early in the year. And while I have money, I am fighting for a bone graft! MS or not- I deserve some one to try. But for now, I am ANGRY! Angry at myself for letting it get like this, angry that I had to make choices in my health care and put priorities on what was most important at the cost of other things. And angry that my frustration at the situation is not completely understood.

Sunday, January 28, 2018

Cold/ Flu

Wow! I seriously just lost a week of my life. While I had my cell phone and could have blogged about the horrible cold turn flu, having the strength to do anything was a stretch. Thankfully my side of the bed is right next to the bathroom. I actually would remind myself daily not to smell! I mean I seriously felt like a parent of a newborn. Thank goodness for an awesome husband that helped keep track of days/time/ and meals! Just crazy!
I am finally starting to feel sorta better. I can breathe and my chest doesn't feel like a brick on it.
Good to feel alive!

Friday, January 19, 2018

Sinuses from hell

I often wonder what issue is connected to what. I mean I am very aware of my body and know when my legs are weak. I also know when the heat is getting to me. Those are both things that I can point to and say without a doubt, it's MS related.
But my nose... It runs like crazy! Or it will get stuffed up and I am miserable. Either way, rarely a day goes by that sinus "something" isn't a factor in my life. I seriously don't remember a day when I didn't have to blow my nose multiple times. And yes, I take allergy medicine and about a billion other things to avoid the feeling. Trust me it is not a great life!
It is seriously crazy. And I can't help but wonder is my MS part of my sinus hell?

Tuesday, January 16, 2018


In 2004 my life came crashing down. The words "multiple sclerosis" back then still were such a huge long term unknown in the sense of treatment options and long term care. I saw myself with little to no options available for life...
For about 5 minutes!
It really never dawned on me that MS would ruin my life, just change it. I knew people that had MS and their lives had been... Forever changed. I guess it's easy to say I have always been determined not to be them.
Do I have a secret? Some super medical treatment or medical therapy- Heck no!
I have listened to my Doctors over the years and followed their advice (within reason). I have stuck to taking meds when needed as needed.
And sure, my life isn't roses. I mean its 12:40 am and I am up typing about my MS & reading old blogs to see how things have changed or when things have bothered me the most (to write about them)... But truth is... I am pretty darn lucky!
I'll take it! Leg cramp and sleepy issues and all!

Sunday, May 3, 2015

Head fog

After only getting less than 3 hours of sleep last night (this morning) I ended up having a pretty functional day. Accompanying my husband to the grocery store and got my lunches packed for the week. I started dinner in the slow cooker and then helped my daughter with some much needed guidance.
Then it was time to test my shoulder. Only one way to see how well my workouts have helped... I figured some bonding with my daughter over some archery way the best way to do both!
Problem with full days... Fatigue creeps in quickly and head fog can be painfully real.
It becomes debilitating to the point of just wanting to chill. Doesn't do well for a social life. But laying in a comfy bed, watching tv, and catching up on the news (or newsfeeds) is just what the Dr ordered!
Snuggling in shifts with everyone who stops by (kids & hubby) is an added bonus. Of coarse having a dog that doesn't want to leave your side is even sweeter.
Yep, I'm hoping I get a full nights rest. Cause tomorrow I've got a full day. I don't have time for head fog and I certainly don't have time for MS.
I'm Made Strong...

Friday, January 2, 2015

Gileyna roller coaster

The last couple months have been quite a ride. Over the last year, my Doctor has been monitoring my white blood cell count has a precaution to taking Gilenya. I have been taking it since 2008 during the FDA study and get my blood work every 3 months. This past year however, was when it really took a turn. The results has continued to fall lower and lower. Each time he would warn if they fell lower we would have to act... I would frown and hope for better results. I even researched online different ways to increase my white blood cell count, but it really didn't seem to matter. Every test the results seemed to get worse til the November test came through. All my numbers had been too low too long. And while some people on some forums argued that they could have gone lower (based on their experiences) my Doctor called it halts. He pulled me off my medication for a month and told me at the time that I might have to change medication and go to an injectable. I literally went to my car and cried.  I stopped taking my medication and my weight skyrocketed out of control over the past month. I gained 15 pounds! Beyond not cool! Yet I was eating healthy!!! I was still very fatigued but at the end of the month my white blood cell count had improved so much I didn't have to go on the injectable I could return to Gileyna. 

Starting taking it again.... Oh the fun! As my body is adjusting I bucking a nasty cold. It's basically a run of the mill chest cold. But the difference is I already have a decease that leaves me with a compromised immune system then add to it my medication, the perfect storm. Oh and it's flu season and I can't have a flu shot.... Ah, cough medicine and rest... Lots of rest.
Hoping my 2015 is a year of good health and happiness, but right now I am not off to the best start.