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?

Another surgery?!?!?

Hopefully the last one this year…..smh

I haven’t seen the surgeon to follow up about my foot surgery yet, so I’m not sure that I’m “done” there yet, but I FINALLY have surgery scheduled for Botox in my bladder on Friday.

The last time I had this surgery was February 9th of this year, and since it only helps relieve symptoms for about 4 months, let’s say I am WAY OVERDUE.

If you’re interested in reading more, the link to that post is here….

You’re getting Botox where?

Both the surgery and “recovery” for this one will be a piece of cake, to be honest the scheduling of it is the most difficult part.  I also hope that doctors are able to come up with some other “treatment” soon because I suspect my body will develop an intolerance or tolerance for it.  (you know when a treatment just stops working?)  and having to carry or wear a bag of pee just plain sucks.  (yes even though I have officially given it a name, it still sucks).  So YAH surgery?!??!

While I’ve got you here though, (I hope you’re still reading).  Can I tell you about my foot?  AGAIN?!?!?

First the “technical stuff”

Today marks one week post op.  I see the surgeon again on Thursday.  I have FINALLY been able to put  weight on it (with the Boot on)  AND can tolerate the pain without pills!

even upI have even been able to walk to the bathroom as long as I have the “even up” on my other shoe to help realign me, stand up straight?  I’m not sure how to explain it, but it makes my shoulders straight when standing and takes pressure off my right hip.  Win win

Since I can get to the bathroom easier now, I was able to take the foley out.  First time I am ever grateful for having such a small house.  (10 steps in one direction from my computer to the bathroom and 15 steps to my bedroom in the other direction).

I no longer have to stay in bed

Keeping my foot elevated is still important though.  I was even able to get the wheelchair out of my house by myself.  I went for a “different” kind of walk the other day, more of a roll?  While I wasn’t able to take my “normal” walk, I did make it around the entire block in the wheelchair, using my arms for a portion and my left leg for the other.  It felt great to be moving again.  I know it will still be a long time before I am able to really walk again, it was freeing to know that I can “get out” by myself…and it’s a hell of a workout to help shed the pounds from all the ice cream Jeri delivered.

Thing One and Thing Two

Although Thing 2 and her boyfriend have been helping tremendously, (Ice pack and coffee deliveries right to my bed)  it’s refreshing to be able to do it myself.  Thing 1 and her husband stopped by to check in too.  She is 5 months now and the baby bump is really there now!!!!!!  As I have said before, I’m only a LITTLE excited!!!!!!   Yah grandbabies!!!!!!

granny imageWhile having so much time to ponder, what I would like to be called,  I think I am going to hope for Mammy,  but I will write more about that later.  I do know for a fact that GRANNY just isn’t going to cut it.  I can’t hear the name without thinking of Granny from the Beverly Hillbillies….. While I do have her spunk, it’s just NOT gonna happen.

Several of you have commented the you are sorry that I am going through so much, and I really appreciate it, but please don’t feel sorry.  I have amazing friends (you included) and family, and have never felt so loved.  Even Einstein has delivered food and….shhhh cigarettes :(.  I will pick up that battle again, just not today.

Thank you all for reading and commenting.  I am sorry that I have missed so much going on in your lives, I will remedy that today.

 

 

 

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

A Letter to My (pre-MS) self

letter

Dear Steve

MS will invade your world very soon. When it arrives it will be unexpected, shocking, and you won’t know what to do. Your inclination will be to ignore it. Don’t.

Your mind will swirl and you’ll become consumed with worry, so these words are intended to provide you comfort and advice. Whether you heed them or not is entirely up to you, but don’t say I didn’t warn you.

Your symptoms will be similar to those of the millions that suffer world-wide from this disease, but they won’t be identical because the way an individual experiences MS is as unique as their fingerprint. It’s different for everyone, so what works for someone else won’t necessarily work for you.

MS comes in different flavors. The most common is RRMS, or relapsing-remitting MS, which is the come and go kind. Those with RRMS experience symptoms, called flares, and these can raise hell with them in a variety of nasty ways over a short or extended time period, but they go away. This process repeats itself, but the frequency in which it does varies.

You will be lucky in one respect with your MS, but not here. Your MS will be the  primary-progressive kind (PPMS), which means it comes and stays, and gets gradually worse over time. Tough break pal. Your goal will be to limit the progression to a snail’s pace.

That’s all the detail I’m going to offer in terms of what you will have to deal with. No sense in causing information overload since you are still trying to grasp the reality of the situation. For now, I’ll keep it basic and offer you these suggestions that I hope you take to heart.

Learn as much as you can about the disease. Go on web sites and become your own expert and advocate. Beware of the message boards, however. It isn’t that they provide bad information, but those who post are generally going through a bad time and are looking for help. Happy stories are in the minority, so focusing on these boards can give you the impression that you’re royally fucked. That isn’t the case, so glean what you can from these platforms, but don’t let them be your bible.

Create a network of MS friends you can share information and commiserate with. You can try support groups in your area, but I think blogs are a better place to start. Not only are these a good place to get information from people who are offering to share their experiences in a less sensational and often humorous manner, but many of these authors are a hoot and more than willing to stay in touch. Who knows, maybe one day you’ll start one yourself.

Get a good neurologist, and don’t be surprised if you go through a few before you find one you trust, who is knowledgeable, who has an open mind, and is willing to work with you.  They must specialize in MS.

Don’t waste your time and money by travelling out of state to visit an institution that is re-known for MS research and treatment. You’re stubborn though, and are going to ignore this advice. So don’t be shocked when you are dumbfounded and pissed about what they tell you, and wonder how in the world they got their reputation.

Get used to needles because they will become part of your life. When you start self-injecting, it takes some getting used to. Please concentrate on what your doing, otherwise it will sting like a bastard and the resulting bruises will be impressive. And when you have your spinal tap, don’t let your neurologist talk you into having it done in his office. Have it done at the hospital. Trust me on this.

Self-injecting will be temporary, and you will graduate to an infusion center. Make sure you drink plenty of water in the days leading up to and the morning of the infusion. This keeps your veins plump and makes it easier for the nurses to hit one. Of course, you will learn the hard way and start following this recommendation religiously only after  it takes six attempts to get two needles in, and your arms look like raw hamburger.

Get used to drugs, and not necessarily the ones you did in college. Most MS therapy involves pharmacology. Your drugs of choice will be steroids and chemo, believe it or not. Get these infusions on a Friday because the chemo will knock you on your ass two days later (Sunday). Why use your PTO if you don’t have to?

Another area you won’t be lucky about is a rare and little known side effect from steroids: hiccups. They will occur the day after your infusion, come and go for the entire day, and be annoying as hell.  When you get the three-day course of treatment at home, they appear on day four and will last for three solid days. I shit you not. They will literally persist all day and night, and you will want to shoot yourself.

Apheresis: you will learn what this is when you go to the infusion center the first time and see other patients hooked up. It isn’t as bad as it looks and it will help you.

Get rest and watch your diet. Fatigue is a very common symptom so there is no need to make it worse. You will become less active over time, so watching what you eat is important because you don’t want to become a blimp. Oh, by the way. You are going to be ravenous the days you get infused with steroids.

Stay out of the heat. Increasing your internal body temperature raises hell with your symptoms, so avoid prolonged exposure to hot and humid conditions. And say goodbye to hot tubs and saunas. Yeah, I know, that really sucks. Deal with it!

Here is the one area where luck will be on your side. Pain is a very common MS symptom, and it can be excruciating at times. You, fortunately, will not have to deal with that, at least not for the first eleven years. If it finds you, you live in a state that has legalized marijuana for your condition, and it’s great for pain. I’m not sure if what they provide will give you a buzz though.

Don’t give into the disease, but don’t be stupid either. Exercise regularly and keep your core as strong as possible. Stay active, do as much as you can, whenever you can, but know your limits and don’t exceed them. The truth is you’ll be able to do mostly everything you can do now. The only difference is you will need to do it more slowly, more carefully, and in stages.

Don’t give up the intimacy in your life. You don’t have to.

half full

Most importantly, living with MS is all about attitude. If your glass is half-empty, you will focus on the negative, what the disease has taken from you, believe you have become a burden to everyone around you, and that your life sucks. This will become a self-fulfilling prophecy and cause your life to spiral into the toilet. Don’t go there.

If your glass is half-full, on the other hand, you will view this as a bump in the road and be fine. Granted, this is a huge bump, and there will be days where optimism is hard to find and you’ll want to scream, but ride that wave. If you do, you will learn to notice and appreciate many little things that you once took for granted, which is never a bad thing. You’re self esteem and sense of worth will also remain intact. Having a good attitude is vital, because MS is part of who you are now. It will not define you or rule your life unless you let it. And really, what choice do you have?

Remember, you are still the same guy you have always been, albeit with a big hitch in your giddy up. You’ll still have the same hopes, dreams and desires. You may have to amend them, but you don’t have to lose them.

Good luck.

Steve