Category Archives: Living with Multiple Sclerosis

My Gift Built from Love

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My (third) foster mother (FM) is spending a couple of months with us, to escape the Iowa winters.  I don’t blame her, I lived through the harsh winters in Iowa, Nebraska and Utah and could care less whether I ever saw snow again in this lifetime!  My kids are enjoying her being with us, and she has already gifted them with a quick three-day weekend to the coast during their spring break and that is a memory they will always have – especially how big my FM’s heart is.

But, she started asking me last year if I was interested in having a sewing/quilting studio.  Of course I am, who in their right quilting mind wouldn’t??!!  And what a gift!  I only lived in their home for two summers and then left to live with an aunt and uncle who finished raising me.  I didn’t realize I left that much of a positive impression on anyone.  When I went and spent two weeks with her last August, she got more involved in the planning of this dream studio….showing me ads in home building projects and planning out the size and space I would need, etc.  To me, it was a pipe dream.  No one had ever spent their money on me in that way.  Oh sure, I get gifts of money for birthdays and at the holidays – and one lovely neighbor gifted me with enough money to cover my initial MS infusion.  I’ve received gifts of airfare from folks who wanted me to come to come see them.  ALL of the gifts I have received have been received with love.

One day, while my foster mother was here this winter, I took her by a place that made pre-built metal buildings.  We stopped and she got some information and pricing for such.  Originally, she wanted my husband and her to build the studio – but, once she saw how busy he already was, she realized that probably was not going to happen.  So, a pre-built building was her next option, and then my husband and kids, along with my FM, would finish out the inside.  She gave us a dollar figure she was willing to work with and thus far, we’re still a bit under budget.

My husband really didn’t want another project added to his already long list of projects but he wanted me to be happy so that was his bottom line.  He can finish is other projects as time permits but only has a couple of months until my FM returns home to finish this one.

Lo and behold, when my husband took my FM over to town again, she ordered a metal building!  It took about a month to be built and delivered, but it now sits right out our back door:

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The heating and air conditioner unit has been roughed in and the reflective insulation on the inside of the building is being cut.  There’s still a lot of inside-work to do, but with the building here, we’re one step closer to that dream!

My FM celebrated her birthday while here, and although this gift is really for the building, it’s what I gave her for her birthday:

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The capital T is for my first name and the capital M is for her first name!  She loved it, said it was perfect for our studio.  And in truth, she wants to utilize the studio in the coming years, as she would like to continue to winter down here.  Which is just fine with us!

And all of this just because she loves me.  Very hard for me to take, but I promise to make the most of it!

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!

Schedules Schmedules

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We are having a whopping good time here – come and join us!  :-)  (NOT)

Next week is spring break for our kiddos.  You’d think that should be a week for a little rest and relaxation and spending time with the kids?  NOT gonna happen with four teenagers in the house!!!  One day, I have to go get an MRI.  Next day, DD#3 has to get a sports physical; that night, we’ll be celebrating her birthday along with my foster mother’s birthday.  Next day all four kids go to the dentist for check-ups.  Next day I have to take my foster mother to town for a chiropractic appointment.  Then, the kids and Grandma have ganged up on my husband to take them on a long weekend to the coast (thankfully, I’ll spend the time they’re gone taking care of the pets and fowl at home alone).  In between all of that, I need to make not one but three special birthday dinners (one on their actual birthdays and one for the day they’ve chosen to celebrate their birthdays), try to remain calm so I can function and still take time to enjoy the kids on their break.

We also have a special project that’s been started and hubster has to do the lion’s share of the work on getting that set up.  Unfortunately for him, he’s also our driver, so he has to do double time instead of me sharing the loads with him. 

And then comes scheduling for DD#1’s high school graduation, the award’s ceremonies she has to attend, the campus tours, the continuous scholarship forms and the never-ending out-of-pocket expenses necessary for her graduation.  Her graduation isn’t until May but it’s already been a LONG semester with something every week for us to deal with for her impending graduation – and her parents trying to keep her grounded enough to keep her grades up.

One-Act Play (OAP) is also taking up time for DD#1 and DD#2.  They have attended three festivals now and that’s the end of those, but competition is the third week of March (and they won’t have practices over spring break) so their director has added yet another evening to their normal practice schedule.  And DD#2 is in tennis, so she practices up to four nights a week and usually ends up staying at school for OAP practices, without a break in-between times.

And then summer schedules have been discussed for a couple of months.  Who wants to go to camp?  What camps do they want to go to?  Who is working this summer?  Who is volunteering this summer?  On and on and on.  I think the only thing that’s been “for sure” determined is Boy Scout summer camp for my husband and son.  Everything else is still being discussed, with dates penciled in on the calendar.

Our kids get as much of us as we can give them.  I would hope that most parents do the same for their kids, so you may already be in the same situation that we’re in.  Many mention the fact that once they leave home, we will miss all this fun.  At this point, that fun is no fun for my husband and I am unable to help much because of my MS. 

We take each day as it comes and keep adding or subtracting from our yearly calendar.  Is anyone else dealing with so many schedules, conflicts and time lost trying to schedule their days and weeks on the telephone?

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!

Thanksgiving Quilted Heart

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This year, I watched many Facebook friends write a day’s worth of “thanks” leading up to the Thanksgiving holiday.  I daresay, I’m one of those who gives thanks daily – regardless of a looming holiday.  I have a prayer list – one side of the list is people who I need to pray for and the other is a list of thanks to praise Him for.   I always say that I have a quilted heart.  It has been ripped out, shredded, hurt over-and-over again – but, with love and forgiveness, it has been stitched back together.  Certain folks need to hear that I am very thankful they are in my life, and in the life of our family:

  • My Creator, my Living God, my Rock – God the Father.  All thanks are His!
  • My life-long partner, my love, my caregiver – my husband.
  • To our four children – I never thought I’d have kids, but it’s the best job in the world, to be a Mother!
  • To my brothers, sisters-in-law and their families – thank you for letting me be a part of a family.  You are loved.
  • To my other families who raised me – my aunt and uncle and my third foster parents, and their families.  You, too, are loved.
  • My MIL and her family – always surrounded by love.
  • My SIL and her family – you make my children’s lives so much more fun!
  • My MS friends, without you, I would surely be floating in a sea of never getting answers for some of the symptoms I endure.
  • My quilt friends – you feed me with your creativity, your exhuberance for life, your friendships and your giving hands.
  • My virtual friends, many of whom I’ve never met but who are still a large part of my online life.
  • Those special friends, the ones who send me gifts for myself or my children – out of the goodness of their hearts.  We work hard to pay it forward, though we rarely pay it forward the same amount as has been given to us.
  • Our church friends, those who pray for us, those who email me to check on me, those who care.
  • The doctors, nurses and other medical personnel who are striving to make those of us with MS suffer less and get better quicker. 
  • The teachers who teach my children – may they be blessed by others as our children have been blessed by their knowledge.

This is certainly not a full list, but it’s a good start.  I must say, I am thankful every single day that I can get out of bed and start my day.  Some days, MS rules my waking hours.  Some days, I am able to live a halfway ‘normal’ life.  Each day I get up is a gift from God, and I will sit on the side of the bed and thank Him for allowing me to have another day with my family and friends. 

To you, I extend a quilted heart Happy Thanksgiving!