Family Fun Despite Multiple Sclerosis - MS Family Discovery Camp 2011

What a weekend!  



Arriving at camp

Most of our family (we were missing the older girls) attended MS Family Discovery Camp over the past weekend.  It was truly a remarkable experience!  We arrived at the "campgrounds” on Friday afternoon. 

The name of the facility is Camp For All.  It is a wonderful place that offers horseback riding, canoeing, paintball, a rock wall, ropes course, zip-line, fishing…well, you get the picture!  The catch is that all of the activities, cabins and grounds are completely  ADA accessible.

My first time on a rockwall (left)!

The Lone Star Chapter of the National Multiple Sclerosis Society holds this camp annually for families with an adult living with MS.  The family can have fun together while sharing and learning from other families about the challenges of living with MS.  Children must be six or older to attend.  Along with all of the fun activities the younger children (under 13) attend a session titled “The MS Experience” where  situations are created that simulate some of the physical challenges that their parent with MS may experience.  One example I heard was of having the kids wear a flipper on one foot and a high heel shoe on the other to create a balance issue.

It was an eye-opening and enlightening experience for me and my husband and kids.  I was a little overwhelmed with the sight of people in various stages of disability and amazed and awed with the positive and persistent attitude of the same.  We enjoyed it immensely and plan to make it an annual event!



The Mysteries of MS and What You Can Do About It

Multiple Sclerosis is a mysterious disease.  There is no known cause, no known cure, and no known concrete trigger for manifestation.  There seems to be a genetic link and there are a variety of suspected environmental, dietary, stress related and/or viral triggering factors.  MS affects every individual differently with variances not only in symptomatology and degree of debilitation but also rate of progression.  With all of the questions associated with the disease it is no wonder that the general population is so uninformed or misinformed about it despite the tremendous efforts by the National MS Society to educate people and raise awareness. 

Treatment options that were nonexistent fifteen to twenty years ago have been developed and have proven statistically to slow the progression and in many cases severe debilitation that has historically been associated with multiple sclerosis and offer hope to those diagnosed.   Statistics though, are about numbers and MS is about human beings.  Human beings have feelings, jobs, friends, families, homes to maintain, LIVES TO LIVE!  Aside from research for drug development, The National MS Society also provides information, support and services to diagnosed individuals and their families and caregivers to aid in all aspects of this disease. 

If you have the opportunity please participate in an MS Movement Opportunity in your area to help raise awareness and funding.  We have joined the 2011 Walk MS: The Woodlands taking place October 22 to help support the National MS Society and everything they do for the multiple sclerosis population.  If you would like to join our team or make a donation, please click the link below: 

Walking the Wilder Way Team Page

Hot Summer Temperatures and Multiple Sclerosis

Wheew!  It sure is hot!  I have read over and over that heat is especially difficult on those of us with MS.  I am not sure really how it affects me yet.  I know I have been especially “overwhelmed” feeling lately.  However, I honestly don’t know anyone that is enjoying the extreme heat we are currently experiencing in East Texas.  If I have had a choice this summer, I have avoided being out in it.   Normally I enjoy the warmer weather and being outside, but this year I have been indoors almost all summer and at this point I have a bad case of cabin fever.  I am ready for some cooler weather and an opportunity to play in the great outdoors a little while! 

The National MS Society has an interesting little webpage about Heat & Temperature Sensitivity that says historically physicians used “The Hot Bath Test” to help diagnose multiple sclerosis.  
People were submerged in a hot bath and if they developed neurological symptoms or if symptoms they had already been having worsened it was determined that they had MS.  Sounds a lot cheaper than an MRI!   

I am curious how the heat affects other people with MS and how they cope.   Please tell!

MS = and the Father’s Day Factor for me….

MS = is a campaign the National MS society currently has to spread the word about MS and how it affects individuals from their point of view.  It is a pretty neat way to educate people about MS.  People have expressed many different viewpoints of what MS equals for them…..some looking at the positive and some looking at the more obvious negative aspects of the disease.  (You can click on the link above in the text to find out more if you are interested.) 

Honestly, depending on the day, my mood and how I feel, MS equals different things to me, some frustrating and some, well, yes positive.  Some of the positive things MS equals are a few of the lessons I have learned from MS.   These lessons include learning to pace myself better and not let myself get overwhelmed with things or by people that are out of my control; Learning to take care of myself, so that I can be better for those that I love; Learning to just not worry so much and truly turn everything over to God; Learning, and this is an important one, to live more in the HERE AND NOW rather than in the past or the future. 

However, there are also times when MS equals something that is not so positive for me as well.  One of those times is Father’s Day.  First, I would like to clarify that I have the most amazing Daddy.   

 He is pretty special to me and I feel so blessed to have been put in his arms at three days old, many years ago.  But there was another man, a father that I never knew and never got to meet because he never even knew I existed, and I waited too long to initiate any type of contact with him (see above lesson!).  I am honestly angry about this situation.  Perhaps this anger is just how I am exhibiting the anger phase of the grief process for being diagnosed because I haven’t had too much anger associated with my diagnosis.  I don’t know, but I do know that I am angry at myself for waiting so long.  I can’t do anything about my procrastination now so I am trying not to hold on to this anger at myself (once again see above lesson) but I am SO ANGRY AT MS because of it.  Maybe it is easier for me to be angry at MS about it than myself or anyone else because I can yell and scream and cry at MS and it has nothing to say back.  I would like to clarify that I am not even mad about my own MS (maybe denial phase?), because you see it was HIS MS that I blame for taking him before I could work up the nerve to contact him.  It was my MS that eventually did lead me to contact his family, which I am glad that I finally did.  I have learned a little about him and seen pictures and learned some about the course of his disease.  I hope to someday forgive his MS, but not today.  I am holding that grudge for now. 

So MS = Mixed emotions for me on Father’s Day.

For those of you that know me, you know that I am not a “down” person.  I realize this post is really a downer and I didn’t mean for it to be, but it has been weighing on me for several weeks now and I felt the need to get it off my chest.   Whew, feel better now!  Thanks for listening!  

Thank you!

I wanted to say thank you to everyone who has contacted me in regard to this blog!  The supportive comments, messages and private emails have all been wonderful and so overwhelming!  Thank you all for standing by me (or helping me stand - in more ways than one) during this journey.

The Copaxone Itch

So I have been on Copaxone for eight weeks tomorrow.  I know because I just checked.  It seems like longer than that.  I have gotten over the fear of needles.  The idea of giving myself a shot every day does not really worry me too much now.  The actual shot is not so bad anyway.   Everyone told me that it would be okay and it really is.   However, the site reactions are about to drive me crazy!  

I did okay the first five weeks I guess.  I had a little swelling and bruising but the swelling went away quickly (usually within an hour) and the bruising was really my fault just learning how to use the little injector thingy.   Now, however I have developed itching at the injection sites and lumps that sometime take weeks to go away.  The itching begins on the second day at each injection site.  When they start to itch they become red and warm.  After about three days they stop itching.  That is great but at any given point I have three that are driving me crazy.  Once the itch subsides a hard knot remains under my skin for sometimes weeks.   

These are all classified as a normal reaction, but that doesn’t make me feel any better when I wake up at night clawing at myself.  I do pretty well at not scratching during the day when I am consciously aware but apparently in my sleep I am not too worried about anything but stopping the itch.  I have scoured the internet and pretty much what I have found is that I will eventually get used to it or it will subside some with time.  Hopefully quickly!  I have tried all the tricks that Shared Solutions suggests to no avail.  I did just read online a few minutes ago about manually taking the cap off the syringe before inserting it into the autoject thingy to prevent any tiny drops from being on the tip of the syringe.  Since the medication is an irritant the theory is that the tiny drop gets on the skin at the time of the injection and causes the itch.  The only part about that that I don’t understand is that the itch usually begins on the second day at each injection site!  I am going to try anyway.  The lumps are not painful, but not very attractive.  

Having said that, I have not missed a dose in all of those eight weeks nor do I intend to miss one!  I am so thankful that there are medications out there that offer a possibility of reducing relapses!  I can deal with the itching and the unsightly lumps if it means that I might not develop any new MS lesions.  I am looking forward to my next MRI to see the results and see how this Copaxone is working for me!  Oh and if you pass me on the street and I’m scratching, well sorry!  Sometimes I just can’t help myself!

UPDATE JULY 4, 2011:  I DO think taking the cap off and making sure there is no medication on the tip of the needle prior to placing it into the Autoject has CUT DOWN on the itching for me. I have also had better luck with the lumps recently by icing them PRIOR TO injection AND THEN AGAIN AFTER. I still have itching but it does not seem to be as extreme as before and the lumps seem to be better (they don't get as big or last as long) with the ice before and after. I was almost to the point of doing manual injections but if this continues to work I think I am not going to go to that just yet.   ****** If this confuses you and you would like to know more please do not hesitate to contact me.  I will find the link to the page that I got the instructions from about taking the cap off of the syringe prior to placing it into the Autoject and put it on here for clarification!******

Now I have MS, so what does that have to do with a Blog and why I am learning to "Blog"

On February 14, 2011 I had my first MRI; actually I had two that day. One was an MRI brain and one was an MRI lumbar spine. Two weeks earlier I had visited my doctor with loss of feeling, numbness and tingling in my right leg and foot. I was pretty sure of what was wrong when I went in that day. I had convinced myself that I had MS. A strange thing to jump to from a tingling leg but there had been other things prior to that that finally had started to add up.

My doctor (and friend) was hopeful that we could find something else that would explain the symptoms. He almost had me convinced leaving his office, but the nagging feeling never completely left my gut. He sent me to a neurologist for a nerve conduction test. We were hoping for a pinched nerve. After the nerve conduction test the neurologist told me that my right leg seemed fine however there did appear to be some irregular findings on the left leg. She told me that if I were her patient she would be looking for MS. She told me to tell my doctor that and she recommended an MRI brain. She tacked on the advice that an MRI lumbar wouldn't hurt to look for other things but based on her observations and what I told her, MS was more likely. After a tearful call to my husband and a quick rundown of what she had said I called my doctor and left him the same information in a message.

Very quickly I was scheduled for the suggested MRI's. Being a little claustrophobic I was not terribly excited about the prospect of climbing into that little tube and staying still for an hour but I needed to know what was going on with me. By the time I went for the MRI's, I could barely walk and had severely self limited driving because I could no longer feel my foot on the gas pedal or brake. This was seriously cramping my style. I had two very active kids that needed to get to school, practice and games and here I could barely leave the house!

I am a medical transcriptionist and type Radiology reports locally so once my MRI's were dictated by the doctor I had access to them. I had taken the day off that day but I work from home so of course I signed in to listen. I only got 17 seconds into the dictation and the radiologist had already said "multiple lesions" and "Multiple Sclerosis". That was all I needed to hear. I burst into tears. So many emotions washed over me.

I felt so broken. I felt completely betrayed by my body. I had stopped smoking years ago. I have a good healthy diet. I am diligent with sunscreen. I rarely drink. I have never done drugs. Why, why, why? It made no sense to me at all! What did this mean for my children? My husband?

It was about this time that my poor husband walked through the back door. He was met with a blubbering mess. I am not sure what I said but he got the picture. I remember telling him over and over, "I am sorry!" He just held me and let me cry for a few minutes.

Now, my kids will tell you I am a cry baby. I cry at Bambi and other moving movies and I cry at songs but I am a single tear kinda girl....not this sobbing person clinging to my husband. I am not sure how long it lasted but I finally pulled myself together.

I immediately started to plan because that is what I do. I am a planner. I research and learn and plan. I read any and everything I could get my hands on that had to do with MS. At the recommendation of a lady from my church I contacted a specialist in Houston for an appointment. The earliest available was two months. That seemed like an eternity. I wanted to go then! That day if possible. My body was betraying me and I needed to fight back. I needed medicine and guidance!

While waiting for the specialist appointment I went back to the original neurologist I had seen. She accepted me as a patient and ordered more tests (which is enough for a whole new blog post, I will save for a later date) and immediately started me on IV steroids for a week, followed by three weeks of tapering steroids. The steroid use is, I am learning, controversial, but I am so thankful for it. It was not immediate, but I did regain the use of my leg and foot. I will not be running any marathons in the near future but honestly I never liked to run anyway. It makes me sweat. :) I can think of much more enjoyable ways to exercise......like dancing!

Anyway, I decided I was going to write about my experience to help me process it all. So many things have been turned topsy turvy in my life now, I needed to be able to put my thoughts down "on paper" so to speak. I tried writing in a journal for a day or two but I have never been good at keeping a journal or diary. I keep hearing about blogs so I thought I would start one. I also hope that my experience might help someone else who might be going through a similar experience. We can get through this together!