Decisions, decisions, decisions

July 7, 2022July 7, 2022 ~ msgracefulnot ~ 13 Comments

I can’t tell you how many times or with how many different people I have had this SAME conversation. This time something changed.

I have been on Tysabri for almost 13 years. That is means close to 140 infusions. I don’t know the exact number, but I’m pretty sure Biogen (the company that makes the drug) could give you an exact number, as well as my JCV number, how many lesions I have on my brain and spinal cord, etc.

Facts we know:

The longer you are on Tysabri, the more likely you are to develop a deadly brain virus called PML. Because of this, most doctors only prescribe Tysabri for a few years before recommending a different drug.
While on Tysabri you have to have blood tests for the JC Virus every 6 months and an annual MRI to monitor your risks for developing PML.

Two years ago, not only did I test positive for the JC virus, but my numbers were quite high. (1 is bad, I was at 3.43.) My neurologist suggested that I consider changing to a different MS treatment. I refused. Tysabri has been a miracle drug for me. (Many posts about it) I did however agree to more frequent JCV testing and MRI’s. I am supposed to go every 4 months, but I haven’t because….well life.

Over the next 6 months, my JC numbers continued to climb to 4.69, so I made what I feel was another concession. Instead of getting an infusion of Tysabri, every 4 weeks, I would allow them to extend the time between doses to 6 weeks. (Personally, I hate the longer time in between infusions, because the last 3 weeks are “slump weeks” for me, but my numbers have stopped increasing.) They are still high, but haven’t gone up, so that’s a good thing.

This last year I’ve noticed that I am more fatigued. I have trouble finding the right words and expressing my thoughts, and my legs are heavier and painful each night. I have been shrugging it off, and attributing it to the longer intervals between Tysabri infusions, the fact that I am getting older, and the additional stresses in my life. (taking care of my parents, covid, and dealing with people in general) , but my last MRI shows that I have new lesions in locations that correspond to my symptoms.

The entire time I was taking Tysabri (at 4 week intervals), I had no disease progression or increase in lesions. (Apparently a six week dosing schedule does not prevent relapses for me) The medical community considers the risks of pml too high for me to go back to a 4 week schedule, so maybe it’s finally time to change?

I’m scared that I am going to start having frequent relapses. I don’t want to go down that road again.

Before Tysabri, I was in a wheelchair. I know it’s not the end of the world, but still. I was severely depressed and was being hospitalized for MS flares approximately every 3 months. Not the kind of life I wanted to live.

I am also pretty scared of some of the side effects of the other drug options available. 😦

I come to wordpress when I need to “get out of my head”. Thank you for allowing me to do that, and reading along. It helps to not feel so alone.

Healthy resources for chronic illnesses

October 17, 2018October 13, 2018 ~ msgracefulnot ~ 15 Comments

Last week I shared, my list of Not your Typical Blogger Awards recommendations. I mentioned in the post that I also had recommendations for chronic illness bloggers that were inspirational and motivating that I would share if requested.

As I continued to reread posts from February of last year, I realized that I had completely forgotten that not only did I actually write a little about MS in February, but I also made a video about being newly diagnosed> I was also fortunate enough to have some of those very same inspirational and motivational bloggers do guest posts on my blog. Their names and links to their blogs can be found here.

I would like to add a few of the chronic illness bloggers that I have also begun following since that post was written that I also find very motivating and helpful.

First is Terri, from Reclaiming Hope. Terri lives with Fibromyalgia, and offers great tips on total wellness, sharing advice on complete wellness encompassing emotional, social, spiritual, occupational, intellectual, financial, and physical aspects. Whether or not, you suffer from a chronic illiness, I think you may find a lot to gain by visiting her site.

Next up is Heather and Dizzy from Dinosaurs, Donkeys, and MS. Heather was diagnosed with MS a only a couple of years ago, but you would think she had been living with MS for a long time, based on the amount of information she shares. Heather shares information about the OMS program, many exercising techniques, and relaxation techniques through her stories with her Donkey Dizzy. She has also begun a podcast featuring two herself and two other MS bloggers from the UK. If you have a minute, potter over to her page, again you will not be disappointed!

Also from the UK is Caz, the author of Invisibly Me. For a quick glimpse at her personality, check out her post, This and That. As with most invisible illnesses, you wouldn’t know that anything is “wrong” with Caz, by looking at her, but she takes this one step further by sharing tips on how she continues to fight and rise above the trials she faces. I especially like her post, What my invisible illness(es) have taught me. If you have another moment, (while you are in the UK :P) take a few steps over to her page. About once a month she will share frugal finds for things she has found that help beat the heat and work on relaxation.

While I’m taking you around the world (well yah the internet is) I’d like to take a moment to visit Vancouver and talk about Amanda from Walk a Myelin* My shoes. Not only does Amanda talk about the realities of living with Chronic Illness on her blog, but she is in the process of writing a book, and often talks about the other side ( caregivers and support people for those of us living with an invisible or chronic illness). To keep in line with the subject I wrote about earlier with being newly diagnosed, I would like to share this post written by Amanda as a place to start.

It is so easy to fall in with “the bad crowd” of people living with chronic illness. By “bad crowd”, I don’t mean bad people, I mean people that spend more time succumbing to their diagnosis and limitations than they do focusing on the positives in their life or are resigned to let the disease consume them. (I think we may all go there from time to time.) Personally, I find it so much more helpful to spend time with people that while maybe struggling, continue to fight each day.

I hope you can take some time to visit the above mentioned websites, and that you find them as helpful as I do!

I have showed you mine, will you show me yours?

Do you have any websites or bloggers that you follow that share tips for dealing with chronic illness? I would love to hear your thoughts

Maybe you can share some recommendations that you have?

We must have a bad connection

March 4, 2018March 3, 2018 ~ msgracefulnot ~ 17 Comments

It’s so easy to tell people “don’t over do it”, “take it easy”, “slow down”, or “don’t worry”. I know it’s easy to say, because I tell people those things all the time too.

My brain tells my mouth to say it, and words come out. For some reason though, my ears do not pass the message on to my brain. (or something like that) Something is definitely NOT working, the dots are not connecting….. smh

“Don’t over do it”, translates to

your pain is manageable today, you better get that done while you can
you don’t know WHEN you are going to feel this way again, so do it NOW!!!
fucking MS smh
but you are SO close to being finished, just do one more?!?!?

“Take it Easy” translates to

It’s ONLY laundry, how hard could this be?
I will only make ONE phone call (never mind that you are going to spend an hour on the phone waiting for a live person)
or getting “pissed off” because NOTHING FEELS easy….grrrr

“Slow Down”, starts the process of

but there is so much to do
never enough time
but RIGHT NOW I feel OK

PART of it is MS, part of it is my personality. I HAVE to make the MOST of each day! I HAVE to feel like I am contributing SOMETHING to the world, instead of being a burden! Some days though, I’m just bored or “stuck in a rut” I feel that pushing myself and pushing my limits will make me FEEL more alive.

I take the GPS estimated time of arrival as a time trial challenge.

So for those of you that also struggle with this “disconnect”, how do you manage this? How do you “slow down” and not overdo it? How do you try to “save” your energy for later?

I have heard (and said) that I should Prioritize and focus on One thing at a time. Ok, here goes, my main goal is to be able to Walk down the aisle at my daughter’s wedding next weekend. My eye is on the prize so to speak. I have set up my week with one thing each day and tried to space the “working days” in between the “recovery days”.

Monday

I have my Tysabri infusion at 9 am. Because I know that I will be “wiped out” for the rest of the day, my mom is coming out to drive me and take me home afterwards. That’s it! That’s my whole day.

Tuesday

I am installing 5 electrical outlets in my house. Since most of my furniture is just kind of piled in the center of the rooms, now is the time to do it. While I have pulled wires, and connected outlets for years, I do still need help. My dad is available to help me before his surgery, which has been rescheduled for March 20th, so now is the time. Unfortunately, this will involve some more climbing in my attic. Definitely a Working day.

Wednesday

I am getting my nails done for my daughter’s wedding. I haven’t done this in years, but if memory serves we correctly, it is a somewhat “lengthy process”, meaning forced RELAXATION time. If I am able to “lose the boot” as planned, maybe even a pedicure?

Thursday

One Doctor’s appointment with my chiropractor to try to adjust any “damage” I might have caused my body over the week. I have to pack for the out of town trip and that’s it.

Friday

Out of town for the wedding!!!!!

So there it is. I have prioritized. I have planned minimally, allowing myself several rest breaks, and I have “my eye on the prize” Wish me luck?

The patient suffers when insurance plays doctor

December 20, 2017October 8, 2018 ~ msgracefulnot ~ 9 Comments

It’s 3:45 in the afternoon here. I had a very relaxing day and A FEW POTS of coffee with a friend today. We literally sat at the kitchen table and drank coffee for hours. While the fact that I sat still in one room was probably very relaxing for Danica, ( she didn’t have to follow me room to room as I fidgeted) it just dawned on me an hour ago why I was able to sit still……

SLUMP WEEK has begun 😦

What makes it worse, is knowing that this week it is going to get worse, because I have to wait an extra week plus to get my infusion of Tysabri. Yah Holiday stress and Slump week combined…oh joy. For those of you that don’t know what slump week is or haven’t heard the expression before, I have written about it in a previous post here. Defining Slump Week Tysabri.

So why do I have to wait an extra week for a medicine that I am supposed to receive every 28 days? Because …..

The HEALTHCARE SYSTEM IN THE UNITED STATES SUCKS

For those of us that are considered “Disabled” by the government ( well by doctors and then the government) Medicare controls our lives. Medicare gets to decide what kind of care you can receive and when. Makes complete sense doesn’t it? HELL NO!!! A group of individuals that are not doctors, and who have not and will not ever meet or see me, get to decide WHEN I can receive treatment for Multiple Sclerosis. I call bunk, bullshit however you want to describe it.

With the new year coming we all have “deductibles” to meet before any of our medical care is covered. I get that part, kind of….Maybe for people that do not have a chronic or incurable illness, but for people that rely on medications and treatments just to get up in the morning or be able to function at all it makes no sense. I have still not actually gotten to my point though.

My last infusion was December 1, 2017. I schedule my appointments for as close to the first of each month as possible, because in addition to meeting a yearly deductible, I personally have to meet a monthly deductible before Medicaid will consider paying the difference.

The hospital bills Medicare $34,978.93 EACH MONTH for my Tysabri Infusion.

Yes that is almost 35,000$ a month…..NOT A TYPO

After Medicare pays their 80%, or negotiated rate, the copay of $1183.52 is billed to me… Heh what the hell that’s pocket change right?

Not to me!!!!! and not to most people that are unable to work because of an illness. Hell I don’t think that is pocket change to anybody….. So anyway, this is where Medicaid comes in. Each month after I meet my Medicaid spendown of medical bills, which for the record is $380.00 a month, Medicaid will review the claim to pay the difference. Do you see why I have to have my infusion on the first of the month? I’m sorry if I haven’t been able to explain it well, it honestly makes no sense to me.

So if I were to go and get my Tysabri Infusion on Friday when I am due for it, I will not be able to get it again until January 19th of next year. It will take them how many months to process all of the claims while I WAIT to have insurance?!?!? This does not cover or include any of my prescriptions which average about $2800.00 a month, or physical therapy, etc etc etc. Basically it sucks.

I know that there are people that have it worse than me. And I know that slump week will pass, but it is definitely here now. I will spend the next week as I am now, READY FOR BED at 4 pm in the afternoon (ok its actually 5, but that’s still pretty early). In pain, with worsening symptoms. I don’t allow myself to make important decisions while I am living in a daze from the cognitive fog, so no blogging until next year? I don’t know.

So I want to take this opportunity to Wish Everyone a Happy Holiday and New Year. I also apologize in advance if it takes me a bit longer than usual to respond.

Being sick sucks 😦

Why I had a TERRIBLE Thanksgiving day

November 27, 2017February 9, 2018 ~ msgracefulnot ~ 7 Comments

When you are sad, or in pain it is so easy to crawl back into bed, to feel like throwing in the towel, and to just give up. In an effort to SHOW UP and “put on my big girl panties”, I am here. I am processing, feeling, and writing.

Let me begin by saying that I HATE THANKSGIVING. Not because I am not thankful for many things. In fact, I remind myself everyday that I have a lot to be thankful for. I hate thanksgiving because I have so many bad memories that occurred on that day. So every year I tell myself that THIS YEAR will be the one. I put so much weight on making ONE DAY perfect. Can you say setting yourself up for failure?

What I hoped would happen on Thanksgiving:

A month ago it was decided that my family would be having Thanksgiving at my parents home which is about an hour away from me. My daughters, myself, Einstein, my brother, his girlfriend, my parents etc would all be there. (12 in total). Everyone is so busy in their day to day lives that I was so excited that we would all be together and able to “catch up”. I told everyone that I would handle the planning, the menu, the times etc. Because I wanted it to be PERFECT. Everyone was on board to let me “handle it”.

As I planned, it also occurred to me that with my kids getting older and having their own homes, my oldest daughter getting married, my mother having dementia, all of us still living within an hour of each other, and just life in general, this may be the last chance I have to make the perfect day. The desire to “hold on to my kids” became as important to me as having oxygen to breathe. I couldn’t very well ask them to not spend it with their significant others, but maybe I could have some “alone time with them” in the morning if we all drove out together.

So for the last month I planned the menu, making sure each person had their “favorite, must have on Thanksgiving food”. I made a carpool plan so that smokers could ride with smokers, those that wanted to show up only for food could get out quick, and I could have that “alone time with my girls”. I even scheduled time so that everyone’s animals would be alone for the least amount of time. I DREW A FRICKING DIAGRAM!

A week before Thanksgiving I confirmed all of my OCD thoughts with everyone. I was so excited! I even made a post that I was turning off all social media and I did!

Thanksgiving morning I was higher than cloud nine. Literally so manic I don’t think my feet touched the floor once. Yah! FINALLY A PERFECT THANKSGIVING!!!!!

Ten minutes before my youngest was supposed to pick me up, Einstein said “I’m not going, I have things that need to be done here, and it’s a minimum four hours wasted”. NOW, I can tell you what it feels like to be dropped out of a plane WITHOUT a parachute.

I felt the whole plan unraveling. Now everyone was going to be upset that their plans were changed. My parents were going to give me the, “we told you Einstein is a waste of time lecture”. The dogs would be left alone…etc etc etc.. I was crushed, I couldn’t breathe, and the amount of tears I cried would have filled a river. OH shit, my daughter would be here in just a few minutes. I didn’t want her to see me like this. I didn’t have time to kill Einstein and hide his body either.

So into the bathroom I went. I tried to clean up my face as quickly as possible, but I was still in there when my daughter arrived. She gave me a hug, and helped wipe my face. She said, “Einstein isn’t going?” I mumbled something incoherent, and she took my hand, led me to the door. I think she may have even put on my coat for me. While I was in my “fog”, she took control, made phone calls, rearranged things, and made sure that we showed up at my parents in one piece.

I spent the entire day in that fog. I smiled when I was supposed to, said “Oh I’m fine, and I’m sorry at the appropriate times, but I wasn’t there. I told everyone I that I didn’t want to talk about it, let’s just have a good day. But yes I wasn’t there. I didn’t get my alone time with my daughters. It wasn’t the perfect day. In fact, I have spent the last several days just going through the motions lost in my own fog.

Now that some time has past, and the fog has cleared a little. I realize that I did it to myself. I set myself up for failure. I forgot to be thankful for all of the things I am thankful for every day and I only focused on the negative. I let one person’s decision ruin something that I had worked so hard for.

I haven’t really talked about this with anyone, other than saying I had a blah thanksgiving, but when another person asked me this morning how my Thanksgiving was, I decided it was time to Wake the hell up, get up and show up. (Thank you for that by the way and to everyone else who offered to talk when I said I had had a terrible day)

I am both Thankful and sorry today. I am thankful that I have so many great people in my life that care about me. I am thankful that although my kids are growing up, they are incredibly strong and caring individuals. ( But I am also sorry that having a bipolar mother made them that way) I’m thankful that both of my parents are still alive.

When I began writing today, I did it in word, not sure whether I was just “getting it out there” or if I would be posting. I decided to post, because I want to “keep it real”. I’m sure other people set themselves up for failure, maybe you can relate and know that you are not alone. Today is a new day and I showed up. I am thankful that while still “covered in dirt”, I am still on the right side of it. Time to shower, get dressed, and work on “owning my own shit”.