It’s not all about me – Day 4

Hmmm….this 29 Gifts in 29 Days thing is not as easy as I thought it was going to be.  I wonder why that is.  I think one of the hardest things is that I don’t get out much these days so opportunities don’t as readily present themselves to me.  The funny thing is that I absolutely LOVE giving to others.  In fact sometimes to the point where Ed often just gives up, shakes his head, and says “Do whatever makes you happy.”.  It’s possible that another part of the problem is that the things that I would normally give in a day I don’t think count.  They are things that I just naturally do.  They are not necessarily “mindful”.   So once again the evening has come and I find myself tired and in my bedroom not yet having given a gift and despairing for the third time in a row that I might have to start over.

Then I notice something that a friend has done that really hurts me.  It’s not the individual act that is so hurtful but that it is a symbol of many things that have come together cumulatively to really make me feel sad, and taken for granted.  I must tell you that lately I’ve been really upset over my lack of local friends.  I know that is simply a byproduct of us only having one car so I can’t make it to playgroups and other outings, and   when that isn’t the issue, then there is the heat I have to contend with, taking care of two toddlers at once, my often overwhelming fatigue, and the fact that I live a ways away from the friends that I do have that like to do things and I don’t feel that it is always fair to leave Ed home with the babies.  I’ve also had one friend move in the last couple of months.  They didn’t move far away but we haven’t seen them since before the move.  Even though I know that she has a lot of things going on right now and a lot of stress, I admit to feeling forgotten about.  The thing that the first friend did got me thinking about friends in general and the friend that recently moved.  I all of a sudden knew I had my gift!

It was time to forget about myself.  My friend who had moved had not done anything to purposely hurt me.  In fact she was the friendwho was around a couple of years ago when I really needed someone.  I almost became paralyzed from MS when pregnant with my youngest daughter and she came to see me every week and often offered to help with other things.  I know a lot of the causes of the stress that is currently effecting her and yet here I sat feeling sorry for myself because we hadn’t seen each other in a while and basically blaming her for that.  No more.  Her son’s birthday is this Sunday and even though there has not been a B-Day party invite, to tell the truth I don’t know if there is even going to be a party, her son was a great friend to G. and we still care and think about him a lot.  We had not gotten him a present but tonight that changed.  I had a lot of fun going through his wish list and choosing things I hoped he would love.  I might not get to see him open them but they are gifts of love and love doesn’t require such niceties to continue.  At the same time I realized that I had neglected to get them a housewarming gift, something I think she would never fail to do.  To tell the truth it’s not something I usually do, but tonight it felt perfect.  I hope she loves it.

It really is good to stop dwelling on my own problems for a little and to let go of perceived slights.  I wish them the best!  Now I am wondering what will be my gift tomorrow.  I like that many of them have surprised me.  If they were things that I would do normally, without mindfulness, I don’t believe that they would have caused such joy in my heart when they were given.

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Another brief interlude from the present…An hour late but good news

Today I had my first appointment with my new neurologist.  We were 20 minutes early for the appointment, but weren’t seen until an hour after our appointment time.  I am actually not complaining.  I think I would willingly wait  2+ hours to be seen at this facility.  Admittedly, I would find it easier if I had a good book as a diversion, but I forgot to bring one today.  However, even if I had remembered a book, I was so nervous that I don’t think I would have been able to read a page of it.

I am lucky enough to live in an area that has an abundance of excellent hospitals, including Johns Hopkins.  For MS, they are viewed as one of the best in the country, as is evidenced by the number of people who traveled from other states just to be treated there.    When we arrived at the neurology floor,we became aware of one downside:  they are now charging a “facility fee” of $73 per appointment, since the building is now classified as an outpatient building.  Luckily, if there are no relapses, we should only have one appointment a year.  However it is now cheaper to go to the ER than to go to a doctor’s appointment…not good news for the local EMS crews out there!

The doctor himself came out to greet us and bring us back to the examining room.  He had taken the time to get to know my history prior to this appointment, though he did go back over everything with me.    This doctor was taking over my case from the previous neurologist who had left the facility.  Since I was not considered a “new” patient, he said that we were only allotted 30 minutes for the appointment, but he was sure we would take longer than that since this was our first meeting.  This comment impressed me very much, as did several other things:  He listened respectfully to everything I had to say; he answered every question without talking down to me; he did not look down on me when I told him what it now takes me to get to sleep (which I know is unhealthy); he was supportive when I broke down when discussing how I felt I had lost a lot of who I was in the last two years; and he decided to test me for several possible complicating factors before throwing more drugs at me.  These in and of themselves would have made for a good appointment, but the best part was that he said he saw nothing in my file or my current examination which made him feel that my my subtype had changed from relapsing/remitting to secondary progressive.  That was what I had been really scared about when approaching this appointment.  The only thing that gives me any concern is the fact that I do not have a way to reach him at any time like I did my last doctor, and that ability proved extremely helpful on more than one occasion.  I am also thinking about looking for a more holistic neurologist to talk about diet and lifestyle changes that have proven helpful with other MS patients.  Johns Hopkins is the best, but they are all about medicine.  Many people have had success with more holistic treatments, so I’d like to give that a try too.

One of the other nice things about Johns Hopkins is that you can get everything done in one place.  We said goodbye to the neurologist, sat in the waiting room for about ten minutes, and then had the eye test done.  We went back to the waiting room for another ten minutes and then I was called to get my blood drawn.  The only thing we didn’t accomplish today,besides eating lunch at a reasonable hour,  was an MRI.  We were told that they never schedule them on the same day.   I go back in three weeks for that.

I’d like to thank all of you who wished me luck today and were keeping me in your thoughts.  Also, an extra special thank you to my friend Kim who watched our babies for us today!

To end this post, I must once again express my unending gratitude for the generosity and support being shown to me and my family as we continue to fundraise and recruit walkers for team Next Steps.  We have been more than overwhelmed by those that have reached out to us and continue to do so daily.  THANK YOU ALL!!!!

Next post it’s once again, back to the past.

And “Ed World” slowly begins to get a crack

Some babies sleep all the time and love their bouncer.  G. was NOT one of those babies!  I would fondly refer to him as my “high maintenance little man”.  He would refuse to be put down; only sleep on me; refuse to go to anyone other his daddy, big sis, or me; and often insisted that we stand and hold him instead of sit and hold him.  I think he was older than four months old before both Ed and I got to sit down to eat a meal at the same time, sans baby.

By time G. was six months, I had decided that I wanted another baby, but there was NO way that I was going to wait until he was easier and then start all over again.  When I was done with this stage, I wanted to be DONE!  Anyway, it’s not like I was a Spring chick and I definitely wasn’t getting any younger.  We decided to start trying for baby#2.

About 2 1/2 months later, I ended my shift on the Paramedic unit at 7am, rolled up my sleeping bag, put it in my locker, probably forgot and left my gear on the unit, and left the fire station bound for vacation at the beach.  I was to return to duty in a week and a half, but as it turns out that was not meant to be.

The second day at the beach, I began to feel as if I had to pull myself up the stairs in the condo we had rented.  I worked myself up to being able to mention my concerns to Ed, but as he could not see me having any problems, he blew me off.

The next morning I went out to get donuts from The Fractured Prune.(This little aside is not MS related, but I must say that some things just restore your faith on the kindness of strangers, and this trip was one of them.   When I got to the store, I went in, got my free sample, YUM, and picked out my dozen donuts.  Only then did I notice the cash only sign.  Not only did I not have any cash on me, but I also hadn’t brought my cell phone to call Ed and tell him to bring me cash.  As I told the store keeper that I would have to come back, she told me to just take them and come back and pay her later.  Who does that in today’s day and age?  I thanked her profusely and made sure to come back as soon as we could.  I hope this aside wasn’t to long for you, but I think we all need a feel good story every now and then.) Once I got back to our building and was on my way back up the elevator, I suddenly felt an  urgent need to pee.  Funny, I hadn’t felt like I needed to go to the bathroom a minute ago.  Well I started to do the well known “PeePee dance,” but it was not to be.  I opened the condo door, threw the donuts on the table, opened the bathroom door, and I lost it.  Somehow I managed to escape without anyone noticing what happened, but I was starting to get scared.  I sneaked off to the drug store and bought some Depends, not something I ever thought I would be doing at age 34, and refused to go anywhere that would leave me out of sight of a bathroom.  This sudden urgency was not a one time thing.

Meanwhile, I started to feel like I was limping and dragging my right foot, but I was the only one who could tell.  It just kept getting worse, and two days later, I told Ed that we needed to find internet access so I could contact my neurologist.  Sitting in a local McDonalds, I called the neurologist’s secretary.  She told me that there was nothing they could do for me there, and that I would have to wait about FOUR MONTHS for an appointment.  Since I had not been into the office in four years, they were planning to treat me as a new patient, essentially penalizing me for not having relapses.  After arguing with her for a while, she told me to call her when we got back in the area.

I then told Ed that I should call work and tell them I wouldn’t be in for my next shift.  He looked up in complete surprise and said “Is it that bad”.  I said “Yes it’s that bad! Why do you think I’m doing all this?”.  He truly had no clue what was really going on.  I guess that’s part of the unfairness of MS, huh?  It’s a silent disease that only the sufferer can hear or truly know.

The next day while shopping, my walking got bad enough that I said I was done.  My family could finally see the limp, and I know longer felt safe driving a car.  I, who would never go to the ER unless I was the delivering paramedic, or I had an open, compound, displaced fracture of the wrist without a palpable pulse, decided it was time to go to an ER.  We found the closest hospital, and off we went.  The ER was almost empty, so we were seen fairly quickly.  In triage, I explained my symptoms and history, and also mentioned that I might be pregnant since we had been trying.  They moved me to a room and started giving me a dose of steroids.  Then the doctor returned to tell me that indeed I was pregnant.  What should have been some of the happiest words I could have heard were about to turn my life into a nightmare.  That’s a story for next time.

A brief break from the past for some news from the present

Over the last couple of days, while writing this blog and doing some research on other blogs related to MS, I have been blessed to come across many beautiful and inspirational blogs and to talk to a couple of the people behind them.  I have contacted a few of my fellow blog writers to ask them if they would be willing to help a new blogger out and link my blog on their site.  I, of course, would do the same with their blog.  I know that it is early yet, but I had one, almost immediate, response from Nadja of LIVING! WITH MS .  Nadja not only linked my blog to her site, but she also did a special blog post to introduce me to her readers.  I am very grateful.  Please go on over and check out her blog!

In other news, I have an appointment with a new neurologist on Wednesday.  I’m a little nervous.  My last neurologist left  Johns Hopkins to go to an institution, to do some more extensive MS research.  Though it was sometimes difficult to get an appointment with him, he made himself available by email, and he also gave us his personal cell phone number for when issues arose.  He would call in prescriptions and arrange steroid treatments without me having to go into the office or a hospital.  However, he was strictly medical.  He offered no lifestyle advice or any information on vitamins/herbs which have possibly proven helpful to a person with MS.

I need to be able to connect with a doctor for him to be able to help me at all.  I do not like “feel good” doctors who only tell you what they think you want to hear, but I do like some discussion and a doctor who explains why rather than just stating the facts.

I’m also a little scared that the classification/subtype of my MS will be changed from relapsing remitting to secondary progressive.  After each of my last two relapses, I have retained some altered sensation in my fingers and weakness in my legs.  This has never happened to me before. In the past, I have always completely returned to baseline.  I am not sure if the weakness in my legs is secondary to the MS or to the simple fact that I have not done any type of exercise since before E. was born.  Hopefully the neurologist will be able to tell.

To add a little humor to this, at least for those of you of you who have been living through or following Maryland weather this last week, MS has at least given me a get out shoveling snow free card for our record setting snowfall!  You have to look at the bright side of things or you could spend your life crying.

This appointment is set up as a returning patient (rather than new patient), since they are treating the situation as if he is just taking over for my previous neurologist.  I just pray he has the time and patience for all my questions about the new studies and treatments being discussed, and to allow me to get to know him.  I could use all the prayers, thoughts, and crossed fingers you have to spare.

I would  like to thank everyone who has signed up to walk with Next Steps and all who have supported us in any way.  At this point the Next Steps team has raised $1,975, thanks to very generous friends, family, and the occasional stranger, and we still have almost two and a half months till the walk.  Hopefully this $1,975 will be completely eclipsed by our total amount on April 24th.  Right now we have a fundraising event planned for March 2, 2010 at Cheeburger Cheeburger in Columbia, MD from 5pm til 9pm.  If you are in the area, go to the Cheeburger Cheeburger page on the right side of this page and print out the flyer to bring with you, or just stop in and say that you are there to support the Next Steps team.  The restaurant has agreed to donate 20% of the total receipts to support our team.   That’s quite a deal!  More fundraising events are in the works so please stayed tuned.

Next post…back to the past.

Thank goodness Tommy had nothing to do!

As I ended my last post, I stated that the next test I had to have performed was a lumbar puncture.  Most of you reading this have never met me, so I just want everyone to know that I am a WIMP!  And, yes, that word does deserve to be in all capital letters.

Now let me clarify just a little.  I am not whiner, I am just a wimp.  If I were to get hit in the head with a baseball, for example, something I had no control over, I’d say “ouch”  and maybe put some ice on it, but you wouldn’t find me complaining about how much it hurt all day long.  In fact, I get over incidences like that so frequently and quickly that other people will often notice that I have a huge bruise somewhere and ask me what the heck happened?!  My response is usually “what bruise?”  However if it something that I know is coming and I have to sit still and allow someone to do TO me, then I am a huge wimp

So on top of being very concerned about the possibility of ending up with a diagnosis of MS, I was facing a procedure that, to me, was one of the worst things that could happen.  I would not only have to be stuck by a large needle, but I would have to be completely still and vulnerable while it was being inserted into my spine.  I had no idea how I was going to deal with this situation.

Being so nervous, I did not want to spend the night before the procedure by myself, so I spent the night at my friend Tommy’s house.  When I woke up that morning, I just knew that I did not want to go by myself, so I worked up the nerve (I don’t like to show weakness) to ask him if he had plans for the day.  To this day, I could not be more thankful that he quickly said he did not have plans and asked me if I would like for him to go with me.

Once we got to the hospital where the procedure was being done and I was checked in, I had to leave Tommy sitting in the waiting room.  I was taken back to the area where the lumbar puncture was to be performed and told to change into a hospital gown, and that the “doctor,” my neurologist at the time, would be right with me.

He came into the room, explained the procedure, and then it was time to start.  No matter how scared I was, no matter how much of a wimp, I understood the importance of being completely still while having a needle stuck into your spine.  To make a horrible experience brief, I will just say that the “doctor” stuck me five times in the spine, was unsuccessful, and then blamed me because I did not hold still.  The “doctor” left me alone in the room saying that he gave up and there would be another doctor in shortly to complete the procedure.

After about a half hour with no one coming into the room, I finally caught a nurse and asked her when the doctor would be in.  She looked at me a little strangely and said that no doctor was coming.  It turns out that my “doctor” had just abandoned me.

I got dressed, went out to the waiting room, and started the longest period of hysterical crying I had ever done up until that point and have not surpassed to this day.  Tommy allowed me to cry for literally hours on end, made sure I got fed, and took me home to my BooBoo, my cat and first love, where I continued to cry for quite a period of time.  I did survive that day, as we all survive most of our hardest days, but I never saw or spoke to that “doctor” again.

And let’s just say that the next time this procedure was performed, I was pre-medicated.