multiple sclerosis

I Don't Know What I Don't Know

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Do you remember when the person you care for was first diagnosed with MS?  You might not have been around them at the time, but I remember it very well.  Those were very confusing days. I was almost sure Lynn had MS.  He didn’t want to talk about it or give the disease any power over him so he refused to acknowledge he “had” it.  He would not read about it, he would not look anything up, he didn’t want to talk about it.  As I’ve mentioned before, he feels that if you give what you have a name, then it tries to take over your life.  If you refuse to allow it to “have” you, then you still have some control.  To me, that was burying his head in the sand. I’m just the opposite.  I think the more you know, the better prepared you can be; so, I started looking up as much as I could “in secret” so I could know what to expect.
I was expecting for Lynn’s first neurological appointment after being diagnosed to be an extensive information session. I figured we would be told what to expect, treatment options, ways to improve his chances of staying healthy, …all kinds of things.  But that didn’t happen.  The doctor came in and took a medical history.  Then he did an examination.  Then he said something about relapsing remitting MS, handed us several booklets on various medications, gave us a handout on a MS study he thought might be a good option for Lynn, and asked if we had any questions???????
Questions?  I had about a million but Lynn had none.  I told myself, “this is his disease and his life.  Let him handle it like he feels he needs to.”  So I didn’t ask any questions but instead went home and read the pamphlets and started checking out information on the National MS Society website. I got an overall understanding of what MS was and some of the treatments, but it was really overwhelming.  There were so many different types and so many different symptoms.  I didn’t know what I needed to know.  Where should I start and what was essential and what was good to know or what might not ever be needed?  That’s when it would have really been nice to know someone who had MS who could have put it all in perspective but although almost everyone we talked to “knew” someone with MS, we didn’t know anyone and we didn’t want to call a stranger to talk.  I was fortunate that shortly after Lynn’s diagnosis, two people I worked with told me their mothers had MS.  That at least gave me someone to question about what was happening.
But you know what I think would have REALLY helped?  It would have really helped if our doctor had decided to treat the person who had MS instead of the symptoms the person had.  I don’t mean to imply that our doctor didn’t do a good job of treating Lynn; he did.  He’s very knowledgeable, he will answer any questions we have, he’s well-respected by his colleagues for his expertise, but unless I asked specifically for some type of referral or information, it wasn’t provided.
I’ve heard about places that have MS Centers.  I think that would be wonderful.  I think that when someone gets diagnosed with MS, they should have a complete physical workup to determine all the potential organs and functions that might be affected.  They need a counselor to discuss their fears, concerns, grief, anger, whatever they’re feeling… and so does their family, both separately and together.  They need to be started on an exercise plan specific to whatever areas of weakness may be present and their caregivers taught how to assist correctly.  There should be a dietician to talk about healthy diets FOR MS PATIENTS; not cardiac healthy eating but what foods are being found to support neuron function.  An appointment with a social worker to talk about planning ahead for applying for Medicare or Medicaid and what resources are in the area to help people with MS.  A pharmacist to talk about the abundance of prescriptions that might help or hinder the symptoms of MS specific to person.  Then wouldn’t it be awesome to have someone to pull it all together and talk about what to expect, handy hints for everyday living, how to handle (fill in the blank)? 
Why can’t a well-rounded approach be used to treat someone with a chronic condition that affects every aspect of their lives and potentially every organ of their body?  When will the medical progression get smart and realize, we don’t know what we don’t know so TELL US! Is that too much to ask?

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Keeping up with the Paper Work

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If you are a full-time caregiver, or even part-time but the primary person responsible for someone else’s care, then you know all about paper work.  It’s another one of the unpleasant aspects of caregiving that we have to endure but are all too often unprepared for or unfamiliar with.  I’m very fortunate in that I have a healthcare background.  I understand the reason behind all that information “they” gather and why it has to be reviewed every visit.  I also know about insurance to a limited degree but more about that from personal experience than professional.  All that being true; however, it still is difficult to keep up with all the paper (virtual or hardcopy) and still quite frustrating at times.
One of the things I did early in my caregiving “career” was to get a journal where I recorded all the events that happened in Lynn’s medical journey.  I wrote down every doctor’s appointment, who he saw and for what and any changes to his medical regime.  That has come in very handy when one of his many specialists asks me when something happened.  Lynn has a mind for dates and events and can tell you right down to the exact date, and often the day of the week, when something happened…and he’s rarely wrong. Me, I can’t remember if my wedding anniversary is on October 10th or the 11th.  When asked when something happened, I can give a general time frame (such as, when the kids were in grade school, high school, or college; before or after we were married…) but I do NOT remember dates; therefore, I have to write them down. 
I also try to keep a running list of all his medications on my computer.  I update it with any change and make sure it’s accurate before any medical appointment.  I update the “current as of” date and always take it with me to give to the doctor.  This saves time when the doctor or nurse is doing a “medication reconciliation” which is a Joint Commission requirement for hospitals and physician practices to be accreditated.
Knowing how important and helpful this information can be, I readily agreed when I was contacted by Tory Zellick to review an advanced copy of her book, “The Medical Day Planner: The Guide to Help Navigate the Medical Maze.”  Tory, herself was one of the caregivers for her mother, who had a six-year struggle with cancer which she was unsuccessful in winning. This book arose from Tory’s struggle to help organize her mother’s care and help everyone who participated in the caregiving to stay up to date. Maybe, if you are the sole caregiver, you would not find it as helpful as those who have multiple people helping out, but I think that even if you are the primary caregiver, you would find this Medical Planner to be a handy tool to help keep all the essential information about your loved one in one place. 
The book is well-organized, sectioned into categories of responsiblity like medications, appointments, important phone numbers, etc. Within each section are worksheets for recording pertinent information on that topic as well as narratives related to the information being gathered.  The narratives are basic and to the point, written in a common-sense approach without too much formal interpretation–just what she found she needed to understand to be able to accurately understand the information needed.
The Medical Day Planner is a spiral notebook type presentation but hard cover so it’s durable.  My only constructive criticism, which isn’t a criticism at all but a personal preference, is that I would have preferred it be in a three-ring binder instead of a spiral binding so the 52-week planner at the end could be replaced annually with new sheets.  Being in a spiral binder, it renders the planner limited to one year and as we all know, if you’re caring for someone with MS, you’re looking at years instead of weeks of caregiving. Therefore, that section is not as useful to me but the rest of the Planner is excellent.  It would also have been helpful to have a “pocket” inside the back or front cover to insert documents that you might want to take with you to appointments.
I’m not sure when the book will be available for purchase but you can check it out further if you are interested by checking out her website, http://allthingscaregiver.com/.  The advanced copy I received also had a sticker that states, “for wholesale information contact, Michele Farrington – mfarrington@tuttlepublishing.com.  It’s worth taking a look to see if you might find it helpful.
Thanks, Tory, for sharing what you learned and for letting me review your work. 
Good luck,
Donna

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Why is Getting Help so Hard to do?

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Ever since Lynn became totally disabled, I’ve had lots of encouragement to get some help.  I know I need help.  My muscles hurt from over use; I get frustrated trying to do everything I need to do; I know that there is a high risk as a caregiver that I will have a shorter lifespan.  So why don’t I just get some help?
I’ve heard from several of you the answer to that question because you have already struggled to make that decision and you encourage me to do the right thing for both myself and Lynn. So why don’t I just get some help?
Protection – Just like a mother lion protects her cub, we caregivers protect the person we give care to.  There is usually a connection with the person both of emotion and responsibility.  As a spouse, I love Lynn and want his every need to be met to his satisfaction, if possible.  As his spouse, I promised to love, honor, and obey in sickness and in health, etc. so I also feel a sense of responsibility.  Rationally, I know that promise does not mean I have to provide the care but there is a commitment and emotional piece that leads me to want to put his needs first before my own.  I also know that I know him better than anyone; what he likes, how he likes it, when he likes it, etc.  I know that any caregiver we hired would not likely be as attentive to him as I am.  Would that person catch signs of distress or illness soon enough to prevent more harm? Lots of “what ifs?”
Selfishness – This is a bazaar one but selfishly I like being recognized for how well I care for him.  Pretty sick, right?  I like to hear compliments about how well he’s cared for and to feel appreciation from family members for “my sacrifices.”  I also have somewhat of a martyr complex for some sick reason.  I find self-worth in sacrificing for others so there is some secondary gain in what I do as well.  Plus I rather like working from home in scrubs rather than putting on makeup and going into work (at least some of the time anyway.)
Financial – This is a big one.  Lynn gets basic social security benefits–hardly more than he took home every two weeks–so my salary is the primary salary.  I make a good salary for the work I do so I’m very blessed in that respect but I’ve run up a lot of credit card bills buying things to make our life easier, medicines, supplies, nutritional supplements, equipment, etc.  All that stuff is expensive and I also had children getting married, unemployed and needing help, going to college, etc.  All that cost adds up.  I don’t have spare money that could cover much in the way of daily care.  I know I need to carve out some income in that direction and over the last year, I’ve managed to pay off some of those bills but buying the wheelchair accessible van and saving to build a new house doesn’t leave much to use. Another consideration is that insurance doesn’t pay for home caregiving, plus I live in a very rural area so resources are limited. 
Lynn’s insecurities – He’s afraid for me to not be here.  He knows that I’ve “saved his life” several times by noticing changes in this condition and getting the help he needed sooner than later.  He knows I will find ways to make what he needs happen and quite frankly, the thought of having a stranger around all the time is not a welcome thought.  What do you do with a paid caregiver when Lynn doesn’t need anything at the time? Do they sit in the room with him and watch TV?  That’s like having a guest around all the time and we’re just not that used to having company.
Then there’s the safety issue.  Criminal background checks, how well does the caregiver know their job, do they lift safely, will they be patient and nice or mean and abusing? 
So much to consider….It’s not easy to take that step even when you know it’s something you really need to do.  I’m getting closer but I’m still not there yet…but it’s only a matter of time.  Pray for me that I’ll get there and find a way to make it work.  Thanks for all the words of encouragement and support.  It really helps.

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Free to a Good Home…with patience

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Lynn has started a new MS medication–at least new for him.  It’s Rebif, an interferon beta-1a therapy that is supposed to slow disease progression, reduce the development of lesions, and reduce exacerbation occurrences.  Sounds like a good drug but it’s also used primarily for relapsing-remitting forms of MS and Lynn maybe into secondary progression now, so we’ll see… What I do like about it is that he only gets it three times a week instead of every day.  That’s a nice difference from Copaxone.
Now, for the other side of the coin and why I want to give HIM away to a good home! Due to the side-effects of the medication, the dosage is titrated upward (i.e., gradually increased over time so that the body has time to adjust to it before increasing the dosage). He just finished the 8.8 mcg dose and will begin the 22 mcg dose tonight. So far side-effects for the flu-like symptoms have been minimal.  However, Lynn is VERY sensitive to any change in medication routine and he’s been feeling miserable all week.
Primarily he has been feeling tired and irritable…nothing seems to make him comfortable.  He has a brief period when he first wakes up in the morning when he feels half-human but by the time he takes his morning medications, completes his morning bathroom routine, and does a few exercises, he’s “done in.” He then has nothing left for the day.  I put him on his peddler and start the process of my dual life.  I work maybe 15 minutes, then, “Hey, sweetie,” is heard from down the hall, and I go (pick one or more: give him nose spray, get him cold water or hot tea, adjust his clothing, fix the peddler, scratch an itch, change the TV channel, help him with the computer, …).  He just can’t get comfortable.
Then there’s the irritability…  I have a baby monitor that sits beside my work computer so I can hear what he needs.  His “comments” generally indicate a great deal of frustration.  I know he has absolutely no patience right now and I usually get a string of commands/requests rather than one or two.  He apologizes all day because he hates to be this way but he’s so miserable he just can’t help it.
He has also gotten depressed.  That is one of the major side-effects of this drug.  In fact, it can lead to suicide.  He’s not there or even close but he was nearly in tears this afternoon talking about being afraid.  Whenever he starts feeling this bad, he becomes afraid that it won’t end…that life going forward will always be this way.  That’s pretty common for anyone who feels bad but I especially think it’s difficult for those with a medical condition that often DOES get worse and stay bad.  He used to not share these concerns with me but he’s learned that if he does, I can usually help him see that there is a temporary reason for why he feels so lousy.  I expect though that he may need a lot more support while on this medication and maybe even an increase in the anti-depressant he’s on.  I’ll keep a close watch out for how he is doing for sure.
The hard part for me now is that I’m so conflicted.  My job needs my attention more these days.  My daughter’s baby is due June 3 and I’m planning a baby shower for her on April 28…that’s fun but it also takes time and a lot of work to put it together.  (it’s not so much work if you don’t already have too much to do but in my small world right now, ANYTHING extra, good or bad, is a lot of work!) I want to be there for him but he’s wearing me out.  Last night I had to get up to either cath him or help him get comfortable literally every hour and a half.   I’ve been miserable myself all day (I did take a nap for an hour this afternoon so that helped a great deal).
He’s napping right now so that’s why I have time to write this.  I dread the next two months as his medication titrates upward and he will most likely get more side-effects. I really pray (literally) that the medication will help him and that his system will adapt soon.
If any of you use or have a family member who uses Rebif, can you let me know how long it takes for the side-effects to settle and become manageable?  Thanks

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Going to the Movies

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I have always enjoyed a good movie. It’s one of the things I miss about not being able to get out and go places now.  However, you don’t have to go out to see a movie any more; you can now do it in the comfort on your own home and with the benefit of a “pause” button. 
What would we do without “pause”?  We rented from “the big red box” a movie called, “We Bought a Zoo.”  Fantastic movie!  I highly recommend it.  So after I gave Lynn his shower, got him dressed, took my own shower (which I find necessary every time I give him one), got him settled with his peddler, and gave him his afternoon meds, I put the DVD in to watch. 
About 10 minutes into the movie, I paused to cath him and fix him some tea.  About 20 minutes later, his foot was hitting his wheelchair so I had to fix that (didn’t pause that time), ten minutes after that, he needed nose spray.  I settled back on the bed for about thirty minutes and it’s “pause time” again for another cath.  Clean everything up and back to the movie.  A few minutes later, he needs his arm scratched.  Ten-fifteen minutes later, his foot hurts and his socks need to be pulled up.  (This one takes a pause.)  Got him settled, restarted the movie, and he needed nose spray again (he has chronic sinusitis).  Then another cath (yes that’s three in the space of what should have been a two-hour or so movie.  Ah, yes more tea is needed too. 
I lost count of how many times I was interrupted during the movie.  Seems like at least every 10-15 minutes.  I used to think the kids were tough to watch a movie with.  I think Lynn wins the contest as to who needs more attention.  It’s not always like this but it often is at night.  Late evenings are always bad and this past week has been significantly so.  He just started Rebif so he’s having to get used to that.  His dietician started him on some new supplements that help with removing bad stuff and rebuilding good stuff.  The pollen is heavy which always takes a major toll on his energy level.  So it’s been a hard week for him and it doesn’t seem to be getting any better.
But with all the pauses and the interruptions, we managed to go to the movies and we both really enjoyed it.  Certainly isn’t something we could do at a theater (can you image how irritated our “seat mates” would have been if I had gotten up to help comfort Lynn that often?)  But we adapt to our limitations and we find ways to have fun and get entertained.  Our Friday night date was different but enjoyable for us both.  Hey, and if you haven’t seen that movie yet, it’s a really good “feel good” movie.  I recommend it!

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Multitasking

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When I was trying to decide what to write about this week, I was having a hard time coming up with something unique.  I’ve touched on many of the hardships and challenges associated with being a caregiver but as I look out the window at all the new growth for spring, I am also thinking of all the benefits.
Some of the challenges we ensure also have benefits associated with them.  I realized early in my life of caregiving, actually when I was acting as both a Mom and caregiver for my child who had a chronic health condition too, that God prepares us for the challenges ahead without our realizing it.  It seems in looking back that each difficult road I’ve traveled helped prepare me for something ahead that would have been more difficult if not for the previous experience.  For myself, I find that God led me in a very unique way to prepare for where I need to be now. 
I originally trained to be a nurse.  My first nursing position was evening shift and I worked “the house” training other nurses in new procedures and helping out in all crisis events.  I learned a lot of skills, both nursing and interpersonal.  When my first child was born, my husband at that time wasn’t coping very well with being the one responsible for her care while I worked so I sought a day shift position.  I became trained in Infection Control, Employee Health, and eventually was the Director of Education and Training.  From there, I was asked to train in Human Resources so I could take over that department (this was obviously a small hospital).  I eventually stayed in the area of Human Resources but moved to another hospital and focused on Employee Relations and development of policies.  My role was primarily advisory in nature (over the phone or email consultations) and I learned the role technology could play in communication. 
As you can see, my nursing and HR training, as well as experience in use of technology put me in a position to be able to work from home so that I could provide care for my husband.  I can now consult with contacts by phone or email while I’m simultaneously assisting Lynn.  My job with my company is no longer 8:30 a.m. – 6:00 p.m. but is now 24/7 (24 hours/day seven days a week).  By working from home I access my emails and continue to work on projects between the times Lynn needs my assistance.  I’m a 24/7 employee and a 24/7 caregiver.  When you speak of multitasking…I’m the Queen!
I can be directing the action plan for a crisis while I am cooking spinach for Lynn’s diet and giving him his breakfast, all at the same time.  In fact, I would say it’s pretty rare that I focus on one thing at a time.  I expect that is true for all caregivers.  Multitasking is a talent each of us has to develop in order to get everything done that we need to do. We each need more than 24-hours in a day but God in his wisdom realized that if he gave us any more, we would never get any rest!  I know if I had more time, I would just fill it up with more tasks.
Though multitasking is a requirement for being a caregiver, it’s also a blessing we have been provided.  It allows us to manage our lives and the lives of those to whom we provide care.  It makes us better employees and more talented workers.  We develop greater skill and stronger personalities.  The only down side is we tend to try to do too much at any one time and we forget to take time for ourselves.
I guess every challenge has a benefit if we seek it.  Sometimes we just have to look a little deeper to find it.

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Short Trip but Major Planning

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If you are a caregiver for someone who is totally dependent on you for everything, you know that there is no such thing as a “quick run” into anywhere when you take the person you are caring for with you.  Today, Lynn and I had an appointment with an attorney to sign our wills, power of attorney, and medical decision maker documents.  The location was approximately 35 minutes from our home so I estimated we would be gone two maybe two and a half hours.  I also planned to stop at the post-office, return something to the drug store, and stop at the bank.  Here’s how it went…..
The appointment was for 10:30 a.m. so we got up at 7:00 to get ready.  After cathing Lynn and arranging things within his reach, I went to put on clothes and prepare his morning supplements.  Then I returned to unstrap him from his peddlar, put on shoes, etc. and return to the kitchen where he took his supplements and exercised while I ate breakfast.  Then it’s into the bathroom for his morning routine, and to bed to rest while I checked messages at work between answering his calls for assistance.  Then getting him up, dressed, situated into his wheelchair, and groomed for the trip. As he’s waiting, I assemble his “bag” of supplies to go out….saline nose drops, Valium for spasticity, his cell phone, cold water with a straw, a smoothie for a snack, supplies for up to four catheterizations, getting what I needed for the post office, taking it to the van, cathing him one last time, getting the van ready,  securing him into the van and locking up the house. 
Then we’re off to the attorney’s office.  Almost there and he needs to be cathed.  Pull over and take care of that (if you’ve never cathed someone who is in a wheelchair while they’re in a van, you don’t know what you’re missing).  We get to the lawyer’s office, I find a place to park in the shade (it was supposed to be near 80 today) and go in to say, “we’re here.”  Lynn can’t go in because the building is not handicap accessible for wheelchairs (as we found out the hard way the last trip when his wheelchair got stuck in loose rocks when he drove off the sidewalk trying to maneuver around bumpers of cars).  Our lawyer is very nice and he gets everything ready and brings the papers and witnesses to Lynn in the van.  All’s well and we leave.
Next stop is the drugstore.  He stays in the car and I run in to return a mobility table that was supposed to be able to attach to his wheelchair which didn’t.  Fortunately that was a five-minute stop.  Back to the van and he needs to be cathed again but where we are is too public.  I’m craving caffeine so we go to Starbucks where I can park away from viewing eyes.  Another “in van” catheter experience.  Then coffee for me and tea for him after I help him get his smoothie for a snack and strap him in again so we can move on to our next stop. 
The next stop is the bank back near our house.  He needs to get out this time because we are setting up a new account by closing his business account.  That takes about 20 minutes plus we got a safe deposit box for the wills.  The bank was easy to access except doors had to be held for him to drive the wheelchair though since there were no automatic openers.   Back to the van, strap him back in again, and he needs to be cathed again.  I need spinach at Foodlion so we go to the far end of that parking lot, I cath him, again, run inside and return to realize the post office, which is our final stop, would be closed now for lunch. No matter, Lynn is exhausted by now and so we head home for me to feed him and hook him up to his peddlar to help him relax. 
I unload the car, set everything back up for his easy reach, run to the post office alone (which I must say is much easier and quicker alone) and get back in time to, yes, cath him again.  By now it’s 2:30 and I’m ready to begin my day at work….
It’s great to be able to get out of the house now using our van which makes the option to go places actually a possibility.  However, travel is no easy matter.  Supplies must be taken, nourishment must be considered, and comfort must be planned for.  Much like taking a small child somewhere, travel takes significant planning but somehow taking someone who is 6 ft tall and weighs close to 200 lbs is a bit more complicated than taking a 25 pound infant….

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Grieving over things lost

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I thought I was beyond grieving about how things had changed. …or maybe we are never completely finished grieving over loss.  It seems to come back when you’re not expecting it which in many ways makes it harder to handle.
Here’s what brought it on this week.  Every morning as I’m preparing Lynn’s morning medications and nutritional supplements, he listens to his Bible lesson for the morning and then he plays a few songs off YouTube. He loves music.  He is a very talented musician and has a beautiful tenor voice.  Besides the fact that he can no longer play his guitars or hold drum sticks, he also can no longer sing.  His diaphragm muscles are too weak to sustain the slow release of oxygen needed to sing without having too many “breaks” in the lyrics. 
One of his daily exercises is to sing a little trying to strengthen those muscles.  I usually am not in the room when he sings and since he can’t sing very loudly (you need breath to project) I usually don’t hear him.  This week, however, I came into the room as he was singing along with Elton John’s, “I Guess that’s Why They Call it the Blues.”  I like the song as well, so I came into the room singing along.  As I was unhooking him from the peddlar so he could come into the kitchen to eat, we were singing along together.  I could just hear the sound of his former voice.  (Even as I write this, I have tears in my eyes and feel like crying.)  He could not sing a full verse and he would have to “cut out” at the highest notes, but the voice was still there. 
I miss that voice.
I think it was Lynn’s musical talents that made me fall in love with him in the first place.  I’m a sucker for a ballad singer…especially one who plays guitar. Plus he used to write me songs for special occasions that were beautiful.  He even wrote one for me that he sang at our wedding. (everyone say ahhhh…..)  For me, that was my most romantic part of our marriage and relationship. 
That’s pretty much gone now and I miss it.
I miss those times when we used to sing together with old songs on the radio. I miss when he used to surprise me with songs for special occasions.  I miss being in choir with him and practicing our parts as we drove somewhere.  I miss hearing his solos at church.  His voice could touch your soul it was so sweet.  I really miss it and I’m grieving that loss today.
I hope that it will return one day but I don’t expect it to.  During one of his hospitalizations, I was told his loss of lung capacity was significant and would likely decline further over time.  He’s much better now than he was but I also know that anything that affects his lungs could create a crisis for him.  Practicing singing will help make that more difficult but it won’t prevent it.
I guess the other part I miss is the intimacy that his singing gave us.  Our hearts connected during those times.  We can no longer be physically intimate and though we are closer now than we ever have been, the relationship is different when the husband has to have all his care provided by his wife.  The man wants so much to care for his wife, to protect her, to do for her and make her life better.  It’s the essence of being the husband.  When the wife becomes the protector, the provider, the one who cares for and does for both of them, it changes that relationship.  It’s still a good relationship but it’s different.  I miss my protector and I miss the romance.
I don’t know why I’m feeling this way all of a sudden.  I just got caught off guard by his singing…nothing else….but then I guess that is how grief is.  You think you’re okay and it sneaks up on you even as time goes by.  It’s just one more aspect of MS (or any life changing illness or injury) that we all live with…saying goodbye to what was and accepting what is.

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Hope or Reality?

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It is Lynn’s belief that if he accepts that he has MS then he is allowing MS to “have” him. He says that he has seen enough people who we struggling along, maybe feeling bad, but still going along until they find out they have a serious condition.  Then as soon as they accept that they have cancer or heart disease or whatever, they give into it and no longer push through it. So what he tells people is that he was diagnosed with MS but that he refuses to accept that he has MS.
Though I understand what he’s saying, I don’t buy it myself.  I’m the type who wants to know as much as I can so I can take control of my options.  I want to choose what I do and when I do it. I want to plan for my future.  I’m a realist. I want to know, within reason, what to expect, good or bad.  I know that knowing can sometimes have a “self-fulfilling prophesy”  component to it but I think that knowing doesn’t mean you have to just accept that nothing can be done but instead it allows you to make intelligent decisions.
When we are expecting test results that may not be good, Lynn usually tells the doctor to tell me the details and he tells me to just take care of it because he doesn’t want to know.  I’ve found that’s not entirely true.  The reality is that he has to ease into the knowledge. He’s more like the person who s-l-o-w-l-y peels off the bandage while I’m the one who ripes it off, sees stars for a moment, and then takes a deep breath and moves on. 
This difference in how we view life and the future has us at odds at times.  For instance, before he found out he had MS, we bought land to build a house.  He wanted to do it all himself so for about five years, he designed the house, researched materials, and found someone to draw the detailed plans.  Then he began to build the house.  We currently have a complete foundation that has been sitting there untouched for 2-3 years.  Last summer, he decided we were going to find subcontractors to start back to work on it.  He has not made much progress on that decision other than he has selected a builder and has some contractors selected and he’s re-designing the house to adapt to being in a wheelchair.
He has changed the design of the master bathroom to make it easier to shower.  He’s figuring out how to put a floor to second-landing ramp in the living room so he can drive his wheelchair to the two lofts that will be at either end of the open living space.  He continues to work on the new home, planning for the future.  He’s looking forward to the day he can oversee it being built and moving in.  He even still wants to add a pond in the back so he can fish….
Me, other the other hand–I’m thinking, “yeah right.”   I have no true belief that we will ever move into that house.  In fact, right now, I can’t say that I even want to.  The house we live in now is wheelchair accessible.  My daughter and son-in-law live ten minutes away.  I have a good neighbor I can call on to look out for the place if I’m away.  It could certainly be designed better for us but if we moved, I would have so much work to do to get the house ready to sell and I had rather burn it down than try to pack everything we have in it! (not really but it will truly be a nightmare to pack up)
If I share that with Lynn, however, then it’s the same as if I’m saying he will never get better.  He works out every day and pushes every day to get stronger so that he may someday be able to walk again.  I have to be so careful with what I say so that I don’t take that hope away from him….but I’m afraid to hope. I know how MS works, especially when it gets to this stage.  It doesn’t go away.  I occasionally hear stories of people who were in wheelchairs who walk again but I’m afraid to hope that that will be him because I don’t want to be disappointed when/if it doesn’t happen.  But I don’t want to stop him from hoping or trying either.  He needs that hope.  He needs something to work toward….and it could happen, couldn’t it?
What if he’s right?  What if the only reason he is unable to do anything for himself is just because he needs to build more strength? What if there is not permanent damage but instead what we see is his de-conditioning from all the set-backs he has had?  What if this new diet continues to make him feel better and by feeling better, he can do more and by doing more, he gets stronger and by getting stronger, he regains his ability to walk?  It could happen, couldn’t it?  If it did, then my reality would totally change and I would be willing to move and pack and whatever else was necessary to start a new life in a new home.
So what do we do?  Hope or live in reality?  I guess I promote hope for him with a strong dose of reality for me.  I still need to plan for “what if” and I still need to make sure his needs, as they are now, are met.  He can hope but I need reality to cope….that’s just the way it is….

Hope or Reality? Read More »

MS Connection Site correction

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Last week I mentioned that the MS society had established a new site to help connect individuals interested in MS. I did not realize at the time that I was using a test site and I gave you the wrong web address.  The site is now open for business at  http://www.msconnection.org.  I hope you will check it out.  There is a discussion group for MS Families called “Care and Support” that can be used to ask questions and get advise from others.   I’ve posted some of my most recent blogs to the site as well.  I think just over 300 individuals were invited to participate in getting the site started before it’s opening day so there is already a lot of content there and should be more as others join in.  I hope you too will take advantage of this opportunity to connect to others.

MS Connection Site correction Read More »

Connect the Dots

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When I was a child, I loved working pencil and paper puzzles. You know the ones I’m talking about?  There were dots, numbers, or letters on a page and as you connected the dots, a picture emerged.  What I did not realize at the time was that doing those pictures was actually very educational.  I learned hand and eye coordination.  For the number and letter ones, I practiced adding or learning my alphabet.  The older I got, the better I got of course but I always loved doing those.
I also liked the mazes.  Sometimes I would cheat (start at the end and work to the beginning) but most of the time I liked thinking ahead, planning my approach and seeing if I could find the best route. 
Life reminds me of those puzzles.  Sometimes I feel like I’m connecting the dots and following the steps in a logical manner.  Other times, it’s like I’m lost in a maze.  I go along fine for a while and then “bump” I run into a wall and have to back up and find a new route.  Doesn’t that sound like life as a caregiver?
When Lynn was first diagnosed with MS, I used my connections at work to start down our path.  I work in a rather large medical center and I know lots of people throughout the center.  I had accompanied Lynn to his cardiologist’s appointment (Lynn also has mitral valve prolapse) and his doctor was asking how he was doing.  I told him that I though his heart was fine but something was wrong with his back.  He asked me who I wanted Lynn to see, I gave him a name, and he got me (Lynn) an appointment. From there we worked our way to a neurologist who was conducting an MS study and he became Lynn’s MS doctor.
Though participation in the MS study, we became friendly with the study nurse.  As I was sharing my concern about how Lynn was feeling and that I though it might be diet related, she suggested a dietician her husband had used.  This dietician had a great interest in MS and she’s the one who found the MS diet that Terry Wahls developed which seems to be making Lynn feel better.
Not everything along this path was a “connect the dots” puzzle. The journey to deal with his severe spasticity was more like a maze.  We tried baclofen tablets until the dose was so high it was obvious that it would not work even with other medications added to make it stronger.  We tried a chiropractor which helped his back but not his muscle spasms.  He tried massage but it released so many toxins in his body that he felt worse.  Then there was acupuncture which for him only caused the spasms to get stronger.  Finally we resorted to a baclofen pump implant so the dose went directly into the spinal fluid. That fixed his legs but now he’s struggling with his arm being tight as a drum. So we turned another corner and tried botox to paralyze the muscle temporarily which worked well for the first few doses but not as good for the last two.  So we back up into the maze and are trying exercise and stretching and next week will try massage again.  So far we have not found the right path in this maze.
But through our MS experience, we have made great connections.  We have some wonderful medical professionals that support us and who truly work to research solutions to his problems.  Our church has been awesome….so many people who hear about our needs and who support us in prayer, donations, assistance of all types.  Our struggles have brought us closer to each other and to our families who stay connected to us now more than ever so they can assist us in whatever we need.
One of the best connections I’ve made is this blog.  I have had so many people connect with me who are experiencing some of what we go through and it’s very comforting to know that they are there.  Knowing how someone else has handled a situation or even just knowing that someone has the same struggle and is hanging in there and surviving each day helps us to push on. 
When Lynn became unable to move around on his own, we stopped going many places.  Mainly now we go to medical appointments or occasionally to the store for something only he needs (he is the only one who can determine what he needs in that department since I am totally incompetent when it comes to figuring out what is needed to fix something).  But even though we are now pretty isolated, reaching out through the internet to find out information or to connect to other caregivers or people with MS keeps us from feeling as if we are isolated.  True, it’s a virtual visit when we talk on-line, but it’s no different from a telephone call and when it’s on-line, it’s on my time which gives me more freedom and more options.
So even though it’s difficult to stay connected if you have MS, it’s possible and it’s necessary.  I cannot get away to go to support groups or conferences but I’ve found out SO much about treatments and options on MS  websites and by reading blogs or comments by people with MS or their caregivers.  We don’t have to be in this alone even if we live alone or in virtual isolation.  That’s why I started blogging.  I wanted to connect to others and hopefully share experiences or something that might make my experiences easier to accept or someone else’s easier to manage. 
I think the MS Connection site that is being set up by the National MS Society and which will go live March 12 (I believe) may help with that as well.  I’ve had the opportunity to see a preliminary version of it and it basically seems like a combination of an MS social network and educational resource. I hope lots of people will share on it because it will certainly provide a way for us to connect the dots from one to another even easier.

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The Day It all Changed

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In 2010, I was going into work every day and Lynn stayed home alone. At that time he was still walking though he would lose his balance frequently and fall. However, being the stubborn man he was, he chose not to use his rollator unless absolutely necessary (i.e. he was too tired or had too far to walk) and would instead hold on to furniture to get around.  On this day in March, I left early to head to Williamsburg to attend a conference for the day.  It was approximately an hour drive to where I needed to go.  I got everything set up for Lynn for the day and off I went.  I had made it to the conference center and was checking in as my pager went off.  I dropped by things on a chair and went out to find out who needed me.  When I saw my home number, I got nervous but figured he was just checking to make sure I had arrived safely.  (He gets very concerned whenever I have travel.) 
I called and said, “I’m here safe and sound…no worries.”  Then I heard his voice and realized that maybe I had a worry after all.  He started out with something like, “I need you.”  One second, I’m annoyed thinking, “what can I do from here?” and the next I’m scared and I’m thinking again, “what can I do from here?”  He explained that he had fallen when he tried to get out of bed and had been trying for an hour to get up.  He was exhausted and panicked and obviously scared.   I did my usual nursing telephone assessment (are you bleeding, can you breath okay, anything hurting, did you hit anything on the way down…) I asked him about calling an ambulance but we didn’t have a key hidden outside and there would be no way for them to get in and no one else was at home for me to call to run over there.  So I told him to hold on and I’d be there as soon as I could.  I grabbed my things and took off.
By the time I arrived home, Lynn had been lying on the floor near a heating vent for about three hours.  He was exhausted from struggling to get away from the vent;  dehydrated from the heat; emotionally distraught from fear and frustration.  He was overheated and started vomiting shortly after I got him off the floor (which was very difficult by this point).  He was in bed for the next two days and was never the same after that.  To this day, he’s now afraid for me to leave him alone for any significant period of time and panics at the though of me being far away.
That day marked the day our lives truly changed due to MS–more so than being diagnosed; more than his losing his job; more than anything that has happened since.  That was the day he became DISABLED.  That’s when he faced his mortality and he realized that life as he knew it had changed and he was no longer in control.
That’s also the day we became “disconnected” from others  After that I started staying home full-time to work and only went into the office for meetings and then only if I had someone to stay with him.  We became more isolated.  Afraid to be around anyone who might make him sick, we stopped going to church.  Limited to a wheelchair (because now he was afraid to walk on his own) we could not visit friends because there was no wheelchair access.  I could not go visit my parents who live five hours away because their home is not wheelchair accessible.  I could not leave him along to go shopping so I shopped via the internet.  I couldn’t visit anyone so they had to come to us (and since we live in a rural area, that was not very convenient.)  I realized that if we kept going that way, depression would set in for both of us and his condition would deteriorate even more.
So we had to find ways to get connected!  I started asking for help from church. We have a wonderful church member who has created a ministry of sending email messages to members to keep anyone who wants to know up to date on prayer requests and praises or requests for assistance.   I sent email requests for help and before long I had the help I needed and the process of connecting again began.  Our families and friends now come to us more often because we have reached out and asked for help…and they give it abundantly.  Even our stent(s) in the hospital last year served to connect us to others.  Through that visit I came up with the idea of this blog by talking to the wife of another MS patient. 
And through this blog, I have connected even more. I connect to people who have MS, people who know people who have MS, people who care for people with MS.  Some live close by and some live very far away.  Some know very little about MS and others have lived with it for 20-30 years.  We are all different but we all have a common connection–MS or caregiving.  That bond makes us family and friends instantly–a connection that brings us together even though I would not know most of these people if I was sitting across from them.  But through this bond of our desire to care for each other and relate to each other,we are connected on an intimate basis.
The National MS Society is starting a similar connection on March 12.  It’s called MS Connection and will be located at  http://ntl.ms/MSconnection.   It looks interesting and looks like a way to help us all make more connections so none of us have to deal with this condition alone.  Check it out when you get a chance.  I think you’ll find it has lots of potential.

The Day It all Changed Read More »

How Many Specialist does it take to Treat One MS patient?

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As I have been reading blogs written by other caregivers or MS patients, that joke that goes around “How many xxx does it take to….” comes to mind.  When Lynn was first diagnosed, I had a basic knowledge of MS and figured that he would have a neurologist to manage all his care but what we have discovered is that specialists only manage their speciality.  If there is a hint of another problem, then Specialist 1 refers to Specialist 2. Often time Specialist 1 doesn’t talk to Specialist 2 and therefore, each Specialist does his/her own thing. 
Now, I’m all for having specialists because medicine is very complicated and I whole-heartedly believe that one individual cannot know everything about everything or maybe about anything.  In fact, the more I learn about anatomy and physiology (i.e. body parts and how they work), the more I know that I don’t know nearly enough. What I don’t understand, however, is why the specialists don’t all talk to one another.  
In theory, that’s what a general practitioner (i.e., Family Medicine or primary care physician) is supposed to do but they can’t do it unless the others all provide a summary of what they are doing as well and keep them in the loop.
When you have MS you will probably need most, if not all, of the following at some point:

  • A GP or HCP – (General Practitioner or primary care doctor) to handle colds, flu, new symptoms, oversee your general well-being, etc.
  • A neurologist – The one who will handle your medications for MS and in general treat your exacerbations and keep you informed about your condition.
  • A urologist – Often the water works don’t work so at some point you might develop bladder or kidney infections or have a need to self catheterize because it’s hard to keep your bladder empty or there are embarrassing leaks.  If bladder pressure increases and causes damage to the kidneys, then a nephrologist (kidney specialist) might also be needed.
  • A psychiatrist – People with MS often have depression or difficulty adjusting to the changes in their bodies and lifestyles.  It’s good to have someone to talk to and someone to manage medications so you might also have a counselor
  • An ophthalmologist – visual changes often occur and may be one of the first symptoms experienced that lead to the diagnosis of MS.
  • A physical medicine or rehabilitation specialist – to direct your need for physical therapy, occupational therapy, control of spasticity, ordering assistive devices, etc.
  • Pulmonologist – sometimes the muscles that control the diaphragm become affected and breathing difficulties occur.
  • Hematologist- many of the MS drugs cause decreases in the production of blood cells.  A hematologist can help determine how best to assist the body in reproducing the necessary cells or providing support in other ways.
  • Speech pathologist-often needed if swallowing or speech becomes affected.

Of course, once you get an autoimmune condition; other medical conditions often develop as well leading to more specialists….

  • hypothyroidism, which is the low production of thyroid stimulating hormone leading to the need for an endocrinologist
  • bowel or other GI concerns which may require the assistance of a gastroenterologist.
  • Heart arrhythmias or high blood pressure due to medications or anemia, etc. requiring a cardiologist
  • Surgeons to implant pumps to deliver anti-spasticity medications or maybe a feeding tube or nerve block.
  • Skin irritations, abnormal growths, wounds, dry skin…all of which might be addressed by a dermatologist.

Are you getting the picture?  MS can affect any “system” in the body.  Whenever the myelin degenerates due to a lesion eroding the nerve covering…whatever that nerve supplies will cause impaired functioning in that area this is no longer getting the necessary stimulation.  So essentially though there are often well-known symptoms of MS, any organ or body part could be affected.  Any new condition could be MS related or it could be a new condition separate from MS all together. 
So the thing to keep in mind here is that the only one who really knows the entire story is the patient and the caregiver.  As Lynn’s caregiver, I keep a book of when he saw which doctors, what he was seeing them for, what they did, etc.  I keep track of all his medications and take a revised list to every appointment with every doctor.  When a new therapy is needed or a new symptom comes up, I try to remind the “specialist” about all the other issues that might be influencing the situation. 
 Therefore, you (and the patient) are the experts.  You know more about your “patient’s” body and what works and what doesn’t work than anyone else.  As Lynn started telling his doctors when he was in the hospital, “you know your specialty but I know my body so whatever you want to do, we need to decide together.”  You have a right as the patient or as the “medical decision maker” to say “no” or to suggest a different course of action.  However, it’s also important to realize that they actually do know more than you do about the speciality so don’t totally dismiss what they suggest.  Just know that you know how you react and feel and that you are an essential component to the success of any treatment plan.
 So, how many specialist does it take to treat one MS patient?  The numbers may vary but the most important specialist is you (the big YOU meaning both you and the person with MS).  If you feel you need something…ask.  If you don’t understand what they are talking about, ask them to put it in simple terms so you can understand.  Each medical profession has its own language so don’t feel dumb if you don’t know what they’re saying, chances are they can’t talk whatever your language of expertise is either.  So ask!  Get what you need, check behind them, and if you’re not satisfied, find someone else.  It’s your life and the life of the one you’re caring for… so do what you need to do.

How Many Specialist does it take to Treat One MS patient? Read More »

Family of bloggers

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When I first started blogging I had no idea what I was doing. I had heard about blogging but since I don’t have a lot of free time, I had not read many blogs.  Then while Lynn was in the hospital, I was talking to a nurse whose husband also had MS and we talked about how difficult it was to go to support groups.  If you’re the primary caregiver, getting away from home for very long is a major effort so belonging to a support group, while it might be beneficial, was just one more thing I would have to do without.
I tried Facebook at first to see if I could connect to other caregivers but to be honest, I’m just not that sociable.  I’m not a “one liner” kind of person (obviously as my prior blogs demonstrate) and just giving a “shout out” to someone doesn’t feel like we’re really connected. Therefore, I rarely even go to my Facebook account.
I realized I wanted to “talk” to people who could relate to what I’m living. I thought there might be others out there who were going through the same thing and who might want to also connect by responding to what I had shared.  That’s where the idea of a blog grew….and it’s exactly what I needed.
When I write this blog I feel like I’m actually talking to someone.  I don’t know most of you but if you’re reading this, it may be because you know someone with MS or you have had to care for someone who could not care for themselves, or you otherwise related in some way with something I’ve said.  That gives us a connection…a sense of community.  When I get comments back on something I’ve written, I feel understood and that I’m not alone in what I’m doing.  Blogging truly has become a virtual support group for me.
What’s really cool is that sometimes someone will actually send me an email and they share their story with me as well.  I feel like I have friends that really get it because they are really living it, too.  We’ve become a family of caregivers–people who care enough to give of themselves.  So thank you for being there for me.  It’s really very healing for me to share my life with you. 
PS, guess who has also started blogging?  Lynn. He has just done two so far but he saw how much I enjoyed it and is trying it himself; only his is about writing.  You can check his out at http://authorrisingtide.wordpress.com/

Family of bloggers Read More »

Privacy? You've got to be kidding…..

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I keep thinking about how this is a topic none of us talk about but everyone has to face at some point so I decided to write about it.  Warning, it may seem insensitive to some but in reality it’s one of the elephants in the room we don’t talk about.
If you are a caregiver (or the one receiving the care) you know that there is no such thing as privacy anymore.  I think that’s one of the most difficult things to get used to in the shift of our personal dynamic with each other.  It was one thing when I was a young Mom and my children followed me everywhere, but once they got to a certain age, that need to go with me everywhere stopped.  They became too embarrassed themselves to invade my privacy.
It’s different when you start losing your privacy when you’re an adult.  I’m 54.  I was raised to be very modest.  I have never liked going to the bathroom with anyone else around.  I never liked showering in gym class.  If I wanted to take care of personal hygiene, I wanted it done behind closed doors…alone.  Furthermore, I wanted those same lines of separation with my spouse to a large extent.  I was never one who felt comfortable with too much sharing of personal space or private moments.  There were just some areas of our relationship I preferred to keep separate.
Once Lynn became disabled, that of course, had to change.  He has NO privacy at all. He had to let go of his dignity completely as his ability to use his hands or balance himself were no longer in his control.  At first it was a little awkward but, like with most things, you both get used to it after a while…especially if you can laugh about it.  We have been in some very awkward situations that could have been humiliating and extremely embarrassing for both of us but instead, when I started feeling that uncomfortable tension mounting, I took a look at the situation we were in and I started to laugh.  Then he started to laugh and before long we were both nearly hysterical laughing. It has really gotten us through some difficult moments.  Thank goodness he has a good sense of humor or my laughing might not have gone over as well.
Another challenge we have had to over come is public restrooms.  I never realized before how difficult it is for the disabled in public areas.  Most places have a “his” or “hers” bathroom. Of course when we go out, that’s a problem for us because he can’t go into the “hers” and I don’t want to go into the “his.”  So what do we do?  We go to the van and take care of the catheterization using the tinted windows in the van to have privacy.  I admit though I see some strange looks at times when I catch sight of people looking in the window as they pass by!
Lynn’s really a good sport about those situations but I’ve found that I’m not there yet when I need a private moment.  You would think that as often as I have to take him to the bathroom or cath him or shower him that I would have no problem when I need to go myself when he’s around but honestly, I still want my privacy!  I resent not being able to go to the bathroom without hearing my name called for help or him waiting expectantly for me in the public restroom while I relieve myself.  That’s just a little too much closeness for me.
So I guess what I’m saying is I want a double-standard when it comes to privacy.  I want my space and I want my own time to have my space without being urged to hurry up.  I want to be able to lock my door, take as long as I want, and do what I want to do in private.  I admit I’m actually glad at times that he can’t follow me when he’s hooked up to his peddlar or in bed because I know that even if he’s calling for me, he will just have to wait. So the bathroom is still my one private domain (at least at our house). I might have to repeatedly say, “wait a minute,” but I can still have my privacy to some extent. 
I’m sorry that he can’t though.  It’s just one more loss that most people don’t even think about but for those of us of live with it everyday, it’s a reality that takes some getting used to.
Hope I haven’t offended anyone.

Privacy? You've got to be kidding….. Read More »

Not anemia? Guess it's MS…

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Lynn saw the hematologist this week to try to find out why his hemoglobin goes up and down.  When we got the lab work back, his hemoglobin had dropped one point which wasn’t that bad actually.  So then why does he get so cold so often? 
The good news is that the doctor ruled out anything like cancer or anemias that are related to serious long-term complicated conditions.  The bad news is that he’s not sure what may be causing it.  He believes that it’s either due to malabsorption (his dietician votes for this option) or it could be due to something interfering with production.  We found out that interferons can affect blood cell production.  Did you know that?  I didn’t. 
He’s been in a study for five years that has him taking two different medications. It’s a blind study so he doesn’t know for sure what he’s taking but the options are either avonex and a placebo, copaxone and a placebo, or both avonex and copaxone. Based on the side effects he experiences, we’re pretty sure he’s been on both avonex and copaxone. The doctor thinks that it’s possible since he’s been on the avonex for five years, that may be part of the issue.  However, he says that there is evidence to suggest that part of the issue is inflammation. 
inflammation? Well, we all know that MS has inflammation at its root.  After all what is an exacerbation but inflammation at a nerve site?  So maybe as his MS inflammation increases or decreases, his production may be affected.
The other thought is that he may have an MS lesion on his hypothalamus.  The hypothalamus regulates body temperature. If he has a lesion short-circuiting his body temperature control then this may be a long-term symptom he has to address.  Talk about being bummed out!  That was rather depressing news. We wanted something he could do something about; not something related to MS!  The hematologist said the coldness could not be related now to anemia because Lynn is no longer anemic…makes sense but then again, anemia, as least iron deficient anemia, has a treatment.  MS basically doesn’t when it gets to the secondary-progressive stage.
So now part of our “normal” life will be dealing with swings in body temperature.  He’s having a really difficult time maintaining a feeling of “normal.”   He either feels like he’s frozen to the bone…wrapped up in arm warmers, leg warmers, drinking hot tea and putting on a snuggie; or he suddenly gets over heated and is ripping off all those things looking for ice water.  The odd thing is too that if you take his temperature with a thermometer, that it doesn’t really change. His temp is almost always 97.5 or there about.
Very disappointing news. 
We did have some good news this week though—Eric, his son does NOT have MS!!  He had an MRI Jan. 24 and it was completely normal!.  We were all very relieved. Lynn has always been afraid that he might have passed the gene to Eric and that he would end up suffering because of him. It’s a relief that is not the case right now.  We know that just because he’s free of it right now doesn’t mean he will always be so but we’ll take it as good news for now. 
So all in all, last week was a typical week living with MS.  It had its good times and it’s not so good times; it brough new challenges and use of old coping tricks.  As with most of life, it’s best to take it one day at a time, keeping it flexible and adapting to the moment and most of all, finding what you can at laugh at each day.

Not anemia? Guess it's MS… Read More »

In sickness and in health…till death do us part

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Donna and Lynn October 11, 1997

Sometimes I catch people looking at me in sympathy and you can read in their eyes that the path I have chosen is too much of a sacrifice but what they don’t seem to understand is that I did in fact choose this life.  No, I did not go out and look for someone who I knew would someday become disabled.  In fact, I was very reluctant to marry anyone after my first marriage ended. 
When my first husband left, he explained he had never loved me but thought I would make a good mother for his children so he married me…then realized that wasn’t enough.  Therefore, after being burned in that fire, I wasn’t so sure marriage was for me. I wanted companionship and I wanted someone who was a man of faith and had strong family values.  I wanted mutual sharing and participation in our marriage. 
The way I met Lynn was through answering his personal ad in the paper.  I screened him as he screened me for two hours during that first phone call.  I prayed about continuing to see him and it seemed that I had the green light.  We dated for about four years before we got married.  Neither of us were in a hurry because both of us had bad experiences the first go round.  I in-fact prayed often to ask God, “are you sure he’s the one I should be with?”  We actually have very little in common except for our faith and family values.  Was that enough?  God seemed to be saying, “yes.”  Even on my wedding day, I kept wondering, “should I really do this?  We are SO very different, how will we ever make this work?” but I took a leap of faith and moved on.
The first few years were very hard as we tried to blend our families and life styles. Those differences I was afraid of were really hard to adapt to.  We really struggled and both of us wondered during that time if we had made a mistake.  We just could not intertwine our lives it seemed.  We each kept ourselves at a distance; I guess both being afraid it would not work.
My biggest issue with our marriage was that he did not need me.  By nature, I “care” for people.  I do things for them; that’s how I show my love.  I couldn’t really do anything for him.  He didn’t need me and I felt shut out.  Then he got MS and though he was still physically able, he needed me.  He needed my support; my reassurance and my understanding. 
I think he had a fear though, at least initially I think he did, that I would get frustrated and leave.  He often talked about how he didn’t want me to get too isolated or fed up with him because he didn’t want me to leave.  I think he finally understands now that I have no intention of leaving.  God gave me a caregivers’ heart.  I don’t mind being a caregiver.  I like being needed in fact.  I don’t mean that I don’t get frustrated and that I never want to escape; no, I feel like that nearly every day.  What I mean though is that we have a bond that we will not break now.
Lynn needs me.  He needs my companionship.  He needs my help.  He needs my participation in his life.  So now I have what I was looking for when I first got married.  I feel wanted and appreciated and needed.  His illness meets my needs in a way.  I guess that sounds sick to some but I don’t think so.  I think God is very wise.  He knew what I needed and he knew what Lynn was going to need, and he put us together.  He gave us both perseverance and commitment to make it through the tough years so that now we both have what he intended us to have.  We are truly one now.  We are each a part of the other. 
I know many marriages break up when one of the partners becomes disabled.  I can see how it could easily happen.  It’s really hard to be the strong one all the time and to dedicate your life to the comfort of someone else, but when I said, “in sickness and in health…till death we do part,”  I meant every word of it.  I’m in it for the long haul whether that’s this year or twenty years from now, he’s stuck with me because I’m not going anywhere.

In sickness and in health…till death do us part Read More »

What a roller coaster!

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Just when you think things are getting better, they start rolling down hill again…
Lynn’s dietician put him on a special MS diet with the purpose of improving absorption of nutrients and more importantly, iron, since he struggles with iron deficiency.  He has to eat three cups of green leafy vegetables per day, three cups of vegetables high in sulfur (broccoli, brussel sprouts, asparagus, etc), three cups of bright-colored vegetables or fruit and the meats each meal must be grass-fed meats or seafood.  Seems like I’m feeding him all the time!  And talk about hard to find…grass-fed meats are not at most grocery stores so the saint who makes Lynn’s meals for him had to really shop around to find them.
Anyway, it doesn’t seem to be working.  Instead of feeling better, he’s much worse over the past week.  I’m sure his hemoglobin, iron, and ferritin levels must be dropping.  He has absolutely no energy, he’s cold all the time again, and just miserable.  I look into his eyes and he just looks sick and weak.  So, I’ve put in a call to get an appointment with a hematologist to find out if something is wrong with his blood. Meanwhile the dietician is working on getting tests to see if the issue is the permeability of his intestines causing him not to absorb what iron he’s taking in.  Unfortunately most of those tests are not covered by insurance so we’re waiting to see how much that will be.  Of course, we will have to do the testing because we have to find out what’s wrong. He’s miserable and when he’s miserable, so am I….Not because I’m such a sympathetic person…no I’m no saint…I’m miserable because he needs constant attention and my patience over doing the same thing over and over is limited.   Like now.  I have to go cath him and I just did that less than an hour ago, and the hour before that…!  Ugh…
I was hoping now that I need to try to go into work one day a week that he would be well enough to make this process easy but when he feels bad and needs so much attention, it’s more difficult.  It went well this week but I was only gone from 7:30 until 11:30.  His mom stayed with him.  Next week my friend will stay with him and I’ll probably be gone a little longer.  He’s been a bit depressed about me going back.  He feels that I’ll be so glad to be away that I’ll want to go in more and more and to be honest, I expect he’s right.  It was actually very nice to be among the working again and to not constantly be interrupted to do something totally non-related to what I was trying to accomplish. 
As tired as I expect I’ll be on those days, I’m looking forward to it although I admit I feel guilty about that.  I know how much he wants me to be here and I know I can probably give him better care than anyone else but I really need a break and some time to myself.  He reminds me of my children and how they would cling when I left them at daycare when they were young. I always felt guilty to walk away when they were clinging or crying–that is until I got to my car.  When I drove away, it was a relief not to have the pressure of the crying and clinging and I admit, that’s how I feel now–relieved to be away.
I hope this works out–my going back to work–but I see trouble on the horizon.  If he’s got a blood disorder then it may be a long-term problem that makes him more difficult to leave.  If it’s malabsorption; hopefully medication will fix that.  I don’t know what it is but it’s something and I sure hope they figure it out soon.  It’s time to move on to some healthy days….
 

What a roller coaster! Read More »

Christmas Eve

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Fixing Christmas dinner

It’s 12:12 a.m. Christmas Eve.  In a few hours I’ll be back up getting ready for my kids to come over for our Christmas Eve time together.  I love having them come over but as with all things, MS gets in the way it seems.
I had a call from my son earlier saying he feels stuffy so he might not come for dinner Christmas Eve night because he doesn’t want to expose Lynn to anything.  All our family is very thoughtful regarding exposing him to anything. They know how fragile his health is and how difficult it is for him to recover. But I really want my son to come.  It just won’t be Christmas if  all the kids can’t be here.
Lynn has felt miserable all day.  He’s been very testy and hard to get along with. He’s so tired and uncomfortable and needs constant attention.  I wonder if he will even be able to enjoy the family time together.  Every night for the past two weeks he’s needed a hot shower to make him feel better.  The kids are coming over around 6:30 so that means he can’t have one.  How will that go?  Will he just suffer through?  I expect he will but I’ll see it and know he’s miserable.  Why can’t he feel good anymore?
He and I were not going to exchange gifts this year because we can’t go shopping but I had a chance to do so Thursday and picked up a couple of things for him.  I hope he won’t be upset that I bought him something but I love to give presents and it’s just not Christmas if you can’t give things to people you love.  I know he can’t shop; plus if he shops on-line he has to use my credit card so I know anyway.   It’s just the way it is. I’m okay with no gifts for me but I really want to give to others.
I admit I haven’t had too much Christmas spirit this year.  I used to do so much at church for Christmas and that really represented Christmas to me as much as anything did.  We haven’t been able to go to church in over a year now so a huge chunk of what makes Christmas special for me is missing.
So ready or not, Christmas is here.  No need to decorate anymore.  If presents aren’t bought by now, it’s basically too late…and in two days, it’s over till next year.  I need more time!  I want more celebration… and I want Lynn to be well enough to enjoy it.
It’s time to go feed him dinner then it’s off to bed for the night.  Tomorrow will be busy with a few errands to run and a roast to prepare for dinner and some last-minute wrapping.  I’m looking forward to it but afraid to get excited as well for fear that something will happen to keep us from getting together.  I sure hope we ALL get to enjoy it.
Here’s hoping you get to enjoy yours too.  After all, we are here, and alive, and loved, and Christ gave up everything to give us hope of eternal life by coming as a baby, totally vulnerable in the world.  What more could we ask for?  Whatever happens, we are blessed.
Merry Christmas.

Christmas Eve Read More »

Lord, please…

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Over the past week, my concern has grown.  I walk into the room and see him sitting there.  His eyes are shaded in pain–not severe pain–more of an aching discomfort due to the broken skin on his coccyx. We’ve tried several types of patches to protect the area but one of them slide and broke the skin.  Then it happened again and more skin was torn.  Now he has an area that’s draining and sore on a place he has to sit all the time.  He can’t be comfortable in bed.  He has to sit up and peddle to relieve the stiffness.  He tries to lie in bed but he just can’t tolerate that for very long. Please don’t let this be the beginning of a difficult to heal bedsore (or in this case, seat sore).
Then there is that look of illness.  He feels miserable–you can see it in his eyes.  He tries to crack a joke but the sparkle doesn’t reach his eyes.  In fact his eyes look sunken and blood-shot.  Blood-shot from the terrible sinus congestion he has which makes it hard to breathe all the time. He has chronic sinusitis and uses 1/3 strength nose spray all the time to combat it but he has to have it at least ever hour.  Imagine how stuffy you feel with a cold and then imagine being like that most of the time.  It’s so miserable. Lord God, help him to breathe easier.
But that’s not what’s behind the look. He feels soooo bad. For months he was on a detox of sorts to try to heal “leaky gut syndrome” and we attributed his feeling bad to that.  Well he’s off the detox now.  Could this “bad” feeling be his reaction to taking the flu shot last week?  If so, why is it taking so long to get better?  Or is this just MS again, rearing its ugly head and making his life miserable?  Where is his quality of life if this is what he has to look forward to?  He tries so hard.  He eats well, exercises, tries to keep a positive outlook and stay active, but it’s so hard to remain hopeful like this.  He’s sick and tired of being sick and tired.  Lord, please show him mercy.
Then there’s the lab work.  I called to check on some lab work he had done two weeks ago.  His hemoglobin was 10.3.  In September it was 12.3!  Why did it drop?  I am hoping that the person who read it to me read an old report.  I’ve sent an email to his PCP to check the lab work since she didn’t order it so we can find out.  If it’s accurate, and I don’t think it is, then something else is really wrong.  I was convinced yesterday it was a mistake but the more I think of it, the more I realize he’s feeling worse and more tired.  His leg is spasming again too and it had stopped, or just about had, when his hemoglobin was up.  Lord, please don’t let that lab result be right because that means another specialist.  He has enough doctors.
He entered the hospital for the first time in his life a year ago this Sunday. During that admission, he was in and out of the ICU four times before he went home.  He’s been too sick the last two years to participate in Christmas and our goal is that he will be able to enjoy Christimas this year AND he will be able to remember it.  Please, Lord, let that come true. 
MS is a strange condition.  I know people whom you would never suspect have MS.  And then I know some like Lynn who seem to have all the symptoms.  I don’t know why it affects some worse than others but I do know it’s disappointing that so little research is being done to look at why it progresses faster in some than others.  I also am angry that there is no treatment for the progressive stages.  It’s like once that point is reached, they are written off.  At least that’s how it seems to me.
He’s calling me again to get him up.  He was able to stay in bed this time about 50 minutes.  I expect he will be up all night now.  Pray he feels better tomorrow.

Lord, please… Read More »

Happy Anniversary

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Donna and Lynn October 11, 1997

On October 11, 1997, Lynn and I got married.  As I stood at the entrance to the sanctuary, with my ten-year old escort (my son), my soon to be husband, was playing his guitar and singing me a song that he wrote just for our wedding.  The theme of the song was, “you’re my best friend.”  How true that was to become.
As I stood there listening, my son kept saying, “you’re not going to cry, are you mama?”  I didn’t.  I was just amazed at his ability to sing to me when I knew how sentimental he was.  He’s much more sentimental than I am.  I’m a realist.  He’s a softy. 
Thinking back to those days, I thought our greatest challenge would be blending the two families and it was indeed a challenge.  There were times in those early years that I was not sure our marriage would make it…but we were committed.  We had said our vows before God and we intended to keep them….no matter how difficult. 
The first years were strained as two very independent people learned to adjust.  I admit my greatest issue with the marriage was that I didn’t feel that Lynn needed me at all.  He did everything himself, he wasn’t one who shared his thoughts very much, and we didn’t really enjoy many of the same entertainments so we lived fairly separate lives.  Realizing that was a major problem we worked on finding commonalities and sharing our lives more.
Fast forward fourteen years….now we share everything and he’s totally dependent on me and we’re closer than we ever could have imagined.  Yes, we even finish each other’s sentences and we often start to mention something we’ve been considering to find out the other one has been thinking the same thing.  We are truly one now.  So while MS has certainly been a major challenge that neither of us really expected back in 1997, in many ways it was an answer to my prayers.  I had often asked God to make us closer–to make us one.  I’ve learned over the years, God has a strange way of answering prayers and I have to say, this one falls into that category, but God took a dreadful condition, MS, and made it an answer to prayer.  How awesome is that?  Because you see, now, we truly are, “best friends.”

Happy Anniversary Read More »

Please participate in this survey related to Caregiver Needs

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I received this email request from the Southeastern Institute of Research asking me to post a link to a survey they are conducting along with the National MS Society  and the National Alliance for Caregiving related to the needs of caregivers.  The study is investigating issues related to caring for someone with MS and the needs of family and friend caregivers.  
The survey takes approximately 20 minutes to complete and is completely anonymous and confidential. No one will ever ask for your name or contact information.  Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the MS Society so that they can learn how to better meet the needs of those caring for people with MS.
 I hope you will consider participating.  The survey closed on  Friday, October 21. For the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.
 Here is the link for you to copy and paste or you can click on it at the right. 
www.sirresearch.com/MScaregiver
 I’ve taken the survey and it asks very relevant questions.  I encourage each of you to take the time to participate.

Please participate in this survey related to Caregiver Needs Read More »

Things are improving…

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I try to be thankful for any positive changes.  Sometimes I almost forget that but I try to remember each night when I say my prayers, to say, “thank you,” for all the good things that happened that day, even if the good thing is that nothing bad happened.

Although Lynn has not been feeling well since this week’s full moon made him feel all achy, we’ve been seeing improvements.

First off, he’s been getting hot and hasn’t had to wear extra layers as much.  We suspected the iron he was taking was helping him and sure enough, we got his lab work back this week.  His hemoglobin had risen from 8 to 12 in just one month!  That’s awesome!  He’s still low but low normal now.  His iron levels are still too low (he’s 33 and normal is 30-400) but he’s now at least in the range.  He’s been so bone-chilling cold for months now that this is great.  The other good point about this is that if he get’s his hemoglobin stabilized, they might do another treatment of plasmapheresis to see if he can get even more improvement.  That wouldn’t be till November or December but that’s a good possibility.

Second, he saw his pulmonologist and got a good report.  We were a little worried because he’s not using his Hayek as much because he now sits up all night to sleep (my third good

change).  Remember, I wasn’t getting any sleep at night?  Well he now sits up in his wheelchair all night attached to his peddler exerciser so that if he gets stiff, he just starts the peddler going again. He’s also careful not to drink very much just before bedtime. That means that now I only get up once a night to cath him!  Which means I sometimes get up to four hours of sleep in a row!  I’m a much happier camper.  Anyway, since he doesn’t lie down, he can’t use the Hayek so we were a bit concerned about what that might mean for his lungs.  His doctor said that as long as he’s sitting up, gravity doesn’t affect his diaphragm so it’s easier for the lungs to expand anyway.  Also, he’s not bothered by sleep apnea when he sits up probably because his tongue doesn’t fall to the back of his throat.  So that’s all good.

He has also started promoting his book through book clubs and has gotten some who want to review it in their club.  He’s sending out letters himself and researching places to contact.  Previously he has always had to do that with either myself helping him or one of our friends.  He’s sent out about 65 emails and so far gotten five positive responses which statistically is very good. The positive responses have been good for his morale and the typing has been good exercise for his fingers.

So we’ve had much to be thankful for this past week or so.  We still have our challenges.  Ragweed is out and making him stuffy and congested.  That’s no fun.  He can’t find the motor he wants for the leg lifting device he wants to make so he can sleep in the bed at night.  My son called to say he might have to move back home because his girlfriend’s family might be evicted in October (they are two months late in their house payment and have already gotten an eviction notice…how cruel).  He stays there so if they lose the house, he will come home till they all find a place to move into later.  Our lawn tractor is broken so we can’t mow but that’s no biggie…it’s mainly the back yard that grows anyway.  The arthritis in my thumb joints and wrists have been really bothering me a lot.
So even though we have new and ongoing challenges we face every day, we have much more to feel blessed about than we had last month– so we’re to the good.  I hope you are as well.

Things are improving… Read More »

9/11 Remembered

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"Emergency Preparedness" helps you to be ready in the event of a disaster.
Aerial view of the debris field of the North T...
Image via Wikipedia

Who doesn’t remember where they were and what they were doing on Sept. 11, 2001? I’m sure every one of adult years who still has the capability to remember the past can tell you a story about how that day affected their lives forever.

Watching the programs today, several thoughts came to mind.

1.  So much has changed – both in America and in our home.  Ten years ago, all three children were still dependent on us.  Now they are on their own and come help us out.  Lynn was working full-time and MS was yet to invade our lives.

However, like a terrorist cell planning, waiting, and taking action, MS was already there doing its damage.  Where in 2001 Lynn was so active he hardly had time to rest; now, any significant activity means he needs a lot of rest.  Where Lynn could fight off a cold, heal quickly from an injury, and go to work in excessive heat or cold; now, any of those things kicks his butt and puts him in a tenuous position requiring all his resources to overcome them.  However, just like America learned to adapt, so did we.

2.  What happens to the infirmed in an emergency? Watching all those people running as the towers fell…thinking about all the others who walked down flight after flight of steps, I wonder, how many were left behind who couldn’t get away on their own steam?  How many used wheelchairs or walkers or rollators or just didn’t have the stamina necessary to evacuate?  They were doomed from the first spark.  Though some may have tried to help and may have sacrificed their own lives to help, the reality is that if you are impaired physically or mentally, for that matter, your hopes of survival in an emergency of mass proportions is significantly less.   I think about that whenever I leave Lynn alone at home to go to the store or run an errand.  I never leave him more than an hour and rarely go more than a few miles away, but I always make sure he’s in his chair before I go. If he were in bed, he could not get himself up and whatever was happening would occur without his being able to get out.  He has an alarm he wears to call for help but realistically, we live in a county with a volunteer rescue or fire department… he would die before a fire truck could get here.
3.  We are truly blessed.  So many watched those towers collapse either on TV or from a few blocks away.  They had loved ones, friends, others they cared about in those buildings and though they hoped, most feared that their loved ones were gone.   They watched the crush of tons of rubble fall on those left behind, saw the flames that caused those filled with hopelessness to jump and they wondered, “was that my spouse/child/ parent/sibling/friend?”  We have MS but we have life and we have hope.  And as long as we have life, we can still love and be loved and have plans and have hope for cures and better tomorrows.   That’s more than can be said for anyone in the planes, those left inside the towers or who were around them when they fell, and those in that section of the Pentagon that also went down.
4.  Through adversity we are stronger.
 I hope that’s true for America.  I know that’s true for use.

9/11 Remembered Read More »

I so want a wheelchair van!

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When we went on vacation, I rented a wheelchair van thanks to the generous gift of one of our church members.  IT WAS AWESOME!  I was so spoiled by that van.

Lynn and I have a 2002 Impala.  When we go somewhere, I bodily list my 190 lbs husband from his wheelchair and set him into the car seat.  He cannot help very much with this process and what makes matters worse is that the way the passenger door opens, I have to swing his hind parts in toward me and then back into the seat.  Some days I barely have the energy to do that without dropping him–especially when he’s wiped out at the end of a long doctor’s appointment or isn’t feeling well.  Ever tried to lift and move 190 lbs of dead weight?  Let me tell you, it ain’t pretty.  Sometimes it takes me several attempts.  I almost get him on the seat and then feel myself slipping.  Many a time I have prayed to be able to move him without either of us getting hurt; and thankfully those prayers have been answered…so far.

For example, today, I took him to the doctor and was having trouble getting him out of the car at the office.  A kind visitor helped me, but she almost caused me to fall as I was swinging him out because I wasn’t expecting the load to be that much lighter.  Fortunately, I was able to stabilize my footing quick enough to sit him down in the portable wheelchair.  Then when I was putting him back in the car after the appointment, my foot slipped on a leaf.  Again I was lucky.  At home it was pouring rain as I got him out of the car, trying to keep his wheelchair dry and get him settled.  Needless to say, I got drenched, but we got inside without any mishaps.   Answered prayers!!

The fact that it’s so difficult to get Lynn into and out of a car has pretty much made us restricted to home except for doctor’s appointments.  We don’t go ANYWHERE.  We keep hoping his strength will improve enough that he can help with the transfers but it takes a long time to get your strength back after being in the hospital and he’s been in four times this past year!  I hear it takes a week to recover for every day in the hospital so it may be awhile…

But that wheelchair van….ahhh…he just drove himself right into it.  He could stay in his own comfortable power chair and just drive right in and right out without any problem.  Not only that!  when his leg started to spasm, I just pulled over and hooked up the peddler and kept him from being so miserable while we traveled.

When the Impala finally stops working, I’ll look for a van for my next vehicle.  Though I really want one now, I just can’t see taking on a large car payment when currently I don’t have any and our bills are already eating up most of our income.  I need to pay off a bit more debt and then….maybe, just maybe, I can find a good used handicap van that would suit our needs.  I worry about a used one because you just never know what you’re getting but …..we’ll see….

In the meantime, keep your fingers crossed that I don’t drop him on any of our doctor’s appointments.  I have one more this week so here’s praying all goes well.

I so want a wheelchair van! Read More »