Category Archives: Multiple Sclerosis

Three Year Anniversary of Living with Multiple Sclerosis

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Today marks my third year anniversary of my MS diagnosis. You can read about my previous updates here, here, here, here and here.

As of the writing of this post, I am a lost cause. I have been on four MS therapies/protocols in my three years since diagnosis and each and every one of them has failed me. The last one I was on is considered to be the strongest MS therapy on the market—and it, too, was a failure. I am now on a two-month hiatus from any MS therapies—letting the last infusion work its way out of my body and then just relaxing with only my daily symptom medications to see how I do. We (my husband and I) felt that I did much better when I wasn’t on any therapy and January 2014 will be the month for us to see how I do, before returning to see my MS neurologist in February 2014. There are two MS therapies left that I have not been on, and she wants to start one of them in February unless we feel it would give me a better quality of life to remain on no therapies. She also said that about 10% of those with MS are unable to tolerate or find help with any MS therapies and I could very well be in that group.

The dizziness, though, continues. Some days, not so bad. Some days, I cannot even walk and my husband has to help me move around the house. It is so darned frustrating and upsetting! And we cannot find a common thread that happens before the dizziness starts. With the dizziness comes the balance problems most folks with MS have. I have fallen up the stairs, crashed into walls, knocked over furniture, etc. Some days because of the dizziness and some days without it. Some days, the painful symptoms pop up, some days they do not—again, no rhyme or reason or recurring event happens—to be able to find a pattern for everything.

I apologize to my family over and over again, knowing that my MS hampers some of the kids’ fun in the house. I apologize to my husband, who has to take care of me when I cannot take care of myself. I apologize to extended family for not being able to participate in things I used to find joy in. And I apologize to myself for being a burden on everyone.

Nowhere is my MS most prevalent than in my quilting. I hit a high mark last month in feeling like I got my quilting mojo back—but, it has already left my body & my psyche. I struggle by making myself go into my sewing room and working on a quilt project—FORCE myself to do it. I am usually happy with the finished project so am glad I made myself do it. I have learned that if I take 15 to 30 minutes at a time in my sewing room, and continue with that time increments throughout the day—I can finish a project without overdoing it physically. It is just getting excited about a project and taking that first step into my sewing room that makes the difference of a difficult situation!

Thank God for my family! They uplift me when I’m down, carry me when I’m unable to carry myself, make up for my inabilities—and continue to love me. Without their love, I would have no purpose to continue to forge ahead of this brain-eating disease!

And I thank God for my online quilting and MS friends—they are a great lifeline when I need it the most.

We do not know what course we will take in 2014, but we DO know that we are aiming for quality of life!

DISHONEST BUSINESS PRACTICES: Barnes & Noble

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If you’ve been a long-time reader of this blog, you may remember that I won a Nook (first edition) in December of 2010 from our local library’s essay contest. I also spoke about my Nook and how much of a blessing it was with my newly diagnosed multiple sclerosis (MS) – here and here.

I have spent HUNDREDS of dollars, if not more, to buy eBooks through Barnes & Noble. I bought my husband a Nook. A secret Santa bought ALL FOUR of my children Nooks this past Christmas. I was happily convinced that we were going to be a Nook family.

I was so very happy with my first generation Nook, but I (selfishly and greedily) wanted more. I earned a bit extra money this past year and my husband agreed that I could get a Nook Color, since I was not only an avid reader but also because it truly was something that helped me cope with the symptoms caused by my MS. I loved it, especially when I traveled, I didn’t need to take my computer along as I could check my eMail via my Nook Color. I rarely went anywhere without it and it continued to help me be able to deal with my MS symptoms.

About two weeks ago, my Nook Color went wacky. That is about the best term I can use for what happened. It would not charge fully or even partially charge. It would switch between screens when unplugged—making itself and me crazy enough that it would just shut down completely. The only time it worked as it should was when it was plugged in—which truly was not a viable solution for me because I was not always near a plugin.

I had my husband find the receipt for when I purchased it and we took it to the big box office store that we bought it from. They refused to help me with it, since I did not purchase their extended warranty.

And let me interject here a thought I had just after this happened—if the extended warranty is at least half of the purchase price of a new product—there were OBVIOUSLY more people having trouble with the product. I did not take that as a warning sign until my psycho Nook Color went on a bender. You can bet I will ask about the price of an extended warranty before we purchase ANY future electronics in the future!

I tried the chat help on the BN.com website, but except for some simple manipulations, they could not help me and referred me to the second tier help with a toll-free number for me to call.

I took the time to call Nook and ask for help on 6/11/2013. “Roxie” did not speak English very well, which was my first clue that this issue would not be solved to my satisfaction—if I cannot understand a customer service rep—why would I expect her to understand me??? The minute I mentioned the power cord and the inability for my Nook to charge completely, she refused to listen to the rest of my complaints. I *knew* it was not the power cord, but she insisted on sending me out a new one and asked me to give it three days after receipt to make sure it worked. I VERY SPECIFICALLY asked if my warranty would be extended because of this issue and she assured me it would. I asked again, at least once if not twice about my warranty (the original warranty was good until 6/17/2013) and she continued to assure me that she extended the warranty until the issues was resolved.

After three days with the new power cord, the problem was NOT solved and I called the second tier helpline again. This time, I got someone named “Karina”—date was 6/18/2013. She told me the warranty was NOT extended by “Roxie” so my Nook Color was no longer covered under the original one-year warranty. This made no sense based on my communications with “Roxie” (who either lied to me or did not understand me)—but she assured me that it had expired. I nearly blew a gasket— told her EXACTLY what my conversation with “Roxie” entailed and—wait, I DID blow a gasket. I was so very upset over the whole ordeal (and for those of you who follow my MS life, stress is one of the biggest factors in exacerbating MS symptoms). “Karina” put me on hold to talk to a supervisor about extending my warranty to cover the issue that had never been resolved. When she came back on the phone, she informed me she was authorized to send me a NEW (emphasis added) Nook Color and that I should be receiving it within the week. I had to agree to send the wacky one back on their dime, which I agreed to. The kicker was that my NEW Nook Color only had a three-month warranty. Of course, if you think about it, that let them off the hook much sooner. I had researched problems with this electronic device and could not keep up with all of the issues it was having. I now knew the product sucked and I was pretty much screwed UNLESS I had purchased the extended warranty from our local office store.

Today, I received my NEW Nook Color in the mail. When we got home, I opened it—only to find this sticker on the end of it (I did open the box so the torn sticker is by my hand, it did not arrive that way):

IMG_0124 (450x299)

I am sure you can imagine the colorful language I used when I saw that sticker. My NEW Nook Color was, in fact, new to me—but NOT new from Barnes and Noble! Why in the heck would I want a preowned, refurbished machine that probably went wacko like my original one??? And it probably wouldn’t go wacko until long after that lovely three-month warranty ran out. This is like purchasing a used automobile and finding out after you took it home that it had been in an accident and that information was never disclosed to you. This NEW Nook Color will promptly be sent back to B&N along with the wacky one.

Is this really how to run a business as big a B&N is? Is it really necessary to LIE to customers? I am quite a Pollyanna and had the expectation that the B&N folks would follow through with what they promised me. Land sakes alive, I am extremely unhappy. I will read the books I already own and save up my money for a Kindle from Amazon or some other tablet that allows for me to read ebooks. I adamantly REFUSE to be treated the way Barnes & Noble has treated me. It is not right. It is a swift kick in my hind end for my blind trust in all things good and I have purchased the last book from Barnes & Noble unless they right the wrongs with me. I will just re-read the books I’ve purchased and wait for whatever comes next.

Barnes & Noble, at the very least, you are DISHONEST to at least THIS consumer.  My money will NOT line your coffers anymore—unless you make this right.

To my friends, please feel free to share this blog post and re-tweet it with as many folks as you can. My bottom line is that my MS symptoms are in jeopardy and my children deserve to have as much of a Mother as I can be—and I need an eReader to be that Mom because I am not only allergic to the print in a book—flipping pages in a book or magazine makes my MS act up—and I get extremely dizzy. It is not just for entertainment anymore. Not only has Barnes & Noble lied to me, I believe they are just as liable for my deteriorating health these past few stressful weeks. Unhappy is as nice of a word I can use to show my disdain for being screwed by a big corporation who has forgotten that customer service and customer satisfaction is what continues to grow a business.

We Interrupt This Quilt Blog for a More Personal Look at Multiple Sclerosis

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I try to keep this blog about quilting or my kids, but there are days (weeks?) when my multiple sclerosis (MS) issues need to be written down—for a reference for myself and as a legacy for my children.

Sometimes life just stinks and you have to make the best of it.

Two-years-ago, the neurologist I was referred to told me I was too old to be diagnosed with MS and she made me get another brain MRI before she believed it. Once she saw that report, she not only could see the three lesions I already had but a fourth one was demyelinating, too. At that point, she begrudgingly agreed that I had MS, though I did not have some of the common symptoms so she still wasn’t 100% satisfied. And part of that, admittedly, was that there is a vascular disease on my paternal side of the family that causes brain and heart aneurysms—it has already killed my dad and my brother—so although she was agreeing with the MS diagnosis, she still kept me mostly in the dark about MS because of this genetic disease.

She had home health come out and give me a high dose of steroid infusions over a three-day course. That helped the swelling in my brain enough that I wasn’t so off-balance and could talk better—where the third lesion was located was in the left cerebellum of my brain that controls everything on the right side—and could at least eat without choking.

And now we come to this year—the year that MS has reared its ugly head. And if that neurologist didn’t think I had MS before, she definitely believes it now! I have had horrid burning in the nerves in my legs and feet. It feels like I am walking on a bed of coals—except my foot is not hot, it is the nerves inside that feel like they are burning up. And the muscle spasms in my feet and legs are nearly constant. They had slowed down for awhile when I started the new injection medication, but they are back with full force now. I obviously notice them happening more when I am on my feet a lot during the day. And the dizziness I spoke of before is happening a number of times during the day. I could just be laying in bed and the little roller coaster in my head starts up and all I can do is try to focus on something (like reading my Nook) and it will eventually go away.

But this past Monday was a day I never want to have again. I never want my kids to see me like that again. I never want my husband to have to care for me like that again. Monday is gone, I pray I never have another Monday like that. EVER.

I was fine in the morning on Monday, as fine as I usually am, with some hip pain. I had an MRI appointment in San Antonio (80 miles one way) and my husband and I went to that and came home. Hence, I was later that usual in taking my afternoon meds—but that has not been a problem in the past. When I got up from nap that is when the nightmare started. I sat up and not only was the roller coaster in my head spinning, but the entire ROOM was spinning! I went to the bathroom, thinking it was just a minor issue and that it would go away like the usual dizziness I live with. I then went outside to visit with my foster mother. When I got up to come back into the house, I realized I couldn’t walk—the spinning of the room was such that my brain was unable to tell my feet to move. I saw our youngest daughter and asked her to help me across the room to our bedroom. She did fine but once I got to the bedroom door, I was once again paralyzed and these darned feet wouldn’t go forward anymore. My husband came and took over for our daughter and was able to keep me upright and aimed at the bed. Unfortunately, that youngest daughter was not the best choice to help her mommy—she was terribly traumatized by the whole event and it took another hour before she quit crying and asking if I would be okay or if I was dyeing. <gulp>

I couldn’t open my eyes. I couldn’t sit down because my hip hurt so bad. My husband got me into a prone position and then went and talked to the kids about what they had just witnessed.

After the kids ate supper, hubby came into our room and it was shot night so he got the shot ready and gave it to me, then brought me my nighttime medicine to take. He then had to take my clothes off of me and put my pajamas on—that was how paralyzed I was from the MS. He got me laying down and covered me up and I was done for the night.

Well, not quite done—I had to get up during the night to use the bathroom, but instead of taking the usual right turn after going past our bed, for some idiotic reason I turned left—and ran smack dab into the chair that we put between our bedroom and the living room—so the dog won’t go into the living room and sleep on the sofa! Once I hit that chair, I knew I was going down, I just didn’t know which part of me would hit first. I guess my head was the best choice (I really had no choice because the room was still spinning) and I landed on my forehead. Good thing as this head of mine is pretty hard and I didn’t even get a rug burn! Once I righted the chair and woke my husband up with my gymnastics, I remembered the way to the bathroom and went there. When I came out, hubby turned on his bedside lamp so I could see to get to my side of the bed.

When I woke up Tuesday morning, the world seemed right. No lasting effects of the dizziness I had endured the day before, though now both of my hips hurt. We think it is because we need to get a couple more tubes for our soft-sided waterbed—accompanied by the fact that when I take my medication at night—I do not move from the position I lay down in.

That’s an awful day in MS-land. We continue to pray for days that are way better than last Monday!

Two Year Anniversary of Living with Multiple Sclerosis

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Today marks the second anniversary of my MS diagnosis. Two-years-ago, when we didn’t know why I couldn’t walk straight or talk right—I promised my husband I would go to the emergency room IF he would allow me to spend Christmas with our four children first. I also told him that I was afraid I had a burst brain aneurysm—which killed my dad and older brother—and that if I didn’t wake up for Christmas, he was to cover me up and spend Christmas with our kids before tending to my body. That reality was scary for both of us and although he did not like my decision one single bit, he promised me he would abide by my wishes. Thank God I woke up and was able to enjoy Christmas with my family!

I went to the emergency room at about 5 pm on Christmas day because I could no longer ignore the symptoms I was having.

After a battery of tests for stroke, heart attack and brain aneurysms—it was an MRI that found the problem. And a nurse practitioner (NP) was forced to give me the results of my brain MRI—not even a doctor around to tell us the awful news. Obviously, I’m still a bit ticked off about hearing the radiologist’s report from an NP. Not that he wasn’t professional but it wasn’t HIS job to such devastating news—but, a physician was not available could not be bothered. We waited for at least two hours for a doctor to discharge us and give us my marching orders for follow-up with a neurologist who specialized in multiple sclerosis. When that didn’t happen, I called my doctor friend and asked her what to do—she told us to check out against doctor’s advice and get the heck out of there—there was nothing more they could do for me. Although this sent the nurses into a frenzied rush to accommodate the discharge paperwork, it was for the best and I was tired of waiting around in a place that was there to help sick people get sicker with the constant care they needed. I also needed to hug my kids just a little more and enjoy the surroundings of our home during the Christmas season!

The second year of living with MS has been a tougher one than the first year. My MS symptoms were getting worse, not better, despite the daily injections I was on. My balance was still not good, the muscle spasms were unbearably painful and no medication was helping calm them. My dizziness has remained, as well, since a few days before I was diagnosed—except now it is everyday and most of the time it lasts all day long.

I was also basically ignored by the highly praised MS neurologist as she pushed me off on her PA (physician’s assistant) for most of the year. Mind you, we LOVED her PA as she was as up-front and much more forthcoming and direct about what I was going through than the neuro was. We honestly liked her better than the neurologist! And for some reason, my chart was not reviewed by the neurologist because in September of 2012, she saw me and made mention to the fact that I was worse (symptom-wise) than when I first was diagnosed and saw her. DUH!

Her conclusion was that the Copaxone was no longer working and I needed to switch MS injections to Betaseron. She also ordered a battery of blood tests to check for other autoimmune diseases and a brain MRI. The blood tests came back all fine except she determined I had immune deficiency syndrome and asked me to see an immunologist about it. Just what I needed—yet another autoimmune issue and a trip to another doctor!

But, we were pleasantly surprised by this immunologist! Thus far, she has been THE! BEST! PHYSICIAN! That I have been referred to. She spent over an hour with us, getting my medical history and even talking a little bit of agriculture with my husband (who has a PhD in a number of Ag related fields). She decided I probably had this immune deficiency syndrome, but I didn’t fit the parameters of the disease—mainly that I didn’t have constant and recurring infections of any kind. She went on to say that she and my MS neurologist have found (in non-formal medical research testing) that the higher the immune system lab numbers, the better the MS medications work—and they had seen the results of such first-hand. This lovely doctor recommended that we not pay her for her time (unbelievable!) but to head around the corner to the grocery store and spend our money on a pneumonia vaccination instead. She also said that IF she and my neuro decide to do a formal medical study of this issue, she would recommend that I be a part of it.

Breath of fresh air! I am pretty sure my husband and I walked out of there totally stunned by her generosity, her medical advice and her wonderful personality!

We definitely followed her advice and went right over to get the pneumonia vaccination, especially since I’d already had pneumonia once this year.

We haven’t had the funds to get an MRI, but should be able to re-apply for assistance to get one after January 31, 2013. The company that pays for them said that I already had one this year and regardless of who pays for it, one is the limit for their funding.

We also jumped through the hoops required to get the Betaseron. The Betaseron folks sent me a free 30-day supply until we could get the documentation together for financial assistance with the medication. Once we got the paperwork in order, we faxed it off on a Friday. The next Monday morning, they had already reviewed my application and approved me to receive financial assistance with the injection meds! We have to pay a small $10 per month administrative co-pay for the meds, but that is small potatoes compared to having to pay full price for the medicine out-of-pocket!

Because of the potential side effects (flu-like symptoms), we were to titrate up from .25 ml to 1 ml over the course of six weeks. I never really had the symptoms that we were warned about, though I do seem to get a headache the day after the injections and have recently begun to have some redness, swelling and pain with the injection sites.

As for my daily living, we take each day as it comes. Some days, I am okay when I get up in the mornings—and some days I have to sit on the side of the bed for a few minutes to make sure I am not too dizzy or have balance issues. I have fallen in the corner of our bedroom, when trying to make our bed, more than once. Hence, slow and easy are the best ways for me to get through my days.

My husband has been unbelievably amazing throughout my MS ordeal! He can basically read me like a book, and can tell when I need to sit down to calm the dizziness. There is not much that can be done about the muscle spasms except to wait them out. Again, some days they are not an issue and some days (especially when I’m stressed), they are ever-present. Does not seem to matter whether I am walking, sitting, standing or laying down—both the dizziness and spasms happen when they happen—and we just have to wait it out.

Here is a photo of the empty prescription medication bottles that I have used—this is just a few week’s worth—and it doesn’t count the Betaseron injection syringes!

Our four children are worried about me, especially when they know I cannot take the muscle spasm medications when I need to drive. I just wait out the pain and it eventually subsides—but nothing is more important than making sure my kids are able to enjoy some semblance of normalcy and be safe in their lives and their needs come before mine. Always!

I have noticed, just lately, that the muscle spasms have reduced somewhat since starting on the Betaseron. I do not know if that means the medication is working—or if it is because of the cooler weather—since heat and a person with MS do NOT go together! Unfortunately, the dizziness is worse and not better. Very frustrating!

I pray often that something will work and help put my MS into remission. That would be a lovely way to live! Until that happens, I will continue on the path that God has laid out for me and enjoy my husband and kids as much as possible. Because, in the end, THEY are what matters to me the most!

Multiple Sclerosis and Family Life

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Since being diagnosed with MS, not only has my daily quality of living changed, our family life has obviously gone through some changes, too. The ups and downs of having a disease such as MS is, at best, unpredictable. Since the flare-up I recently encountered, most of that was handled by myself and my husband while the kids were in school. They did not SEE me all that much to notice much of a difference in my daily living. But, since summer is upon us, they have had more than their fair share of a Mom who is unable to participate in the fun things we used to do.

And it really hit home the other day when my youngest daughter decided she wanted to go spend the week up at my mother-in-law’s house (we live on her property, so it is just up the hill from our house).  Mind you, there’s a family reunion going on and there are other folks here for her to play games with and have fun with—so, that is part of her reasoning. The other part, the youngest offspring plainly stated to me: “Mom, you do not DO anything but lay in your bed when I am home and that is NOT FUN!”

Ouch my heart.

While she is somewhat correct, I am definitely not the fun Mom I always enjoyed being. The flare-up is basically over with and I am just dealing with the everyday life of a person with relapsing-remitting multiple sclerosis (RRMS). But, the migraines are relentless. I have them nearly EVERY. SINGLE. DAY. Sometimes all day, sometimes just part of the day. But, the only thing I can do to keep myself sane is to lay in my bed and read. I am aware of everything that is going on in the house—the kids, the dogs, etc. But, the throbbing in my noggin keeps me from actively participating in the things I love—mainly my family and quilting. While my husband and son were away at camp, I did cook supper for the girls that were home with me and we cleaned up the house a few times as well as took care of the needs of our dogs, turkeys and chickens. But, games?  Stories? Belly laughs? Pretty much a thing of the past when your head hurts just to lift it off of the pillow.

Eventually, I will see a neurologist who specializes in migraines. But, until we can get that appointment scheduled—my poor kids are seeing the life and times of MS and it is no fun for any of us.

Next week, we should all be home for the entire week. My husband is now the go-to Dad for all things, including the fun times the kids want to have. The older girls are exceptionally helpful in making things fun for the younger ones, whether it be through making up stories, enjoying a day of playing games or just hanging out and teasing each other. I guess we will see how well the kids cope with a Mom who is no longer the fun parent!