To Treat or Not to Treat...that is the question

Let's just put this out there... I am hopping mad. I don't want to have MS. I don't want to have limited options in my health care and I don't want to go broke paying for medication that may or may not improve my quality of life or lengthen my life. I went to the doctor yesterday and it wasn't my ideal experience. I felt like my doctor was in a bad mood and that just made things worse for me. I had been contemplating a double-blinded placebo based trial and well, my doctor was very much against it. I specifically went to him for advice. Hello?!? I am not a doctor, nor an expert on trials so I needed his medical opinion and I would have taken his personal opinion too. He said he thought the trial was unethical - I had thought that as well but it did appeal to me to not have to pay for medications for three years - that was the original lure on my part. He said there is evidence based fact that people in early stages of MS who go on treatment immediately have a better lifelong outcome. You see this trial would have given me a 33% chance of no treatment at all... The problem with all of this is that I feel fine right now. Yep that's right. I feel just fine. They say ignorance is bliss and frankly I hate that saying but right now I am feeling good so I am cautious to treat myself with anything that could potentially make me feel not as good. The drugs out there come with there share of side effects, most of which are flu-like. The one I have agreed to go on now after hearing my doctor's strong conviction on the trial I was considering, is called Copaxone. Right now I am thinking my out of pocket monthly cost to be around $400 for this drug - and people I have good health and prescription insurance. The part about this that makes me SUPER mad is that I didn't do anything to get this disease. It isn't like I smoked three packs a day or were super overweight... I got this disease for no reason at all and the worst in all of this is that there is no cause and I have absolutely NO WAY of protecting my daughters from getting it. I hope you are sensing my anger because I am just outraged. At first I tried to take a humorous approach to things but now the reality is setting in and the funny train has left the station.

My dad's praying for a miracle, my husband's in denial and I have to get up each morning wondering if today will be the day that I can't walk. You see my doctor told me yesterday that he is "concerned" about the fact that my episodes are so close together, and he is "concerned" about the fact that my second lesion was on my spine instead of my brain, making me more susceptible to disabilities faster... This is more than I can handle right now - perhaps that's why he didn't tell me this at the first appointment when he diagnosed... Ya know one GIANT bombshell at a time.

Sorry for being a downer right now but this blog is real. I don't hold back my feelings here... this is what I am feeling - ANGER. I am going to eventually go through all the stages of grief and this is stage two... keep in mind though it took 8 years for me to go through all the stages after my mom's death... yikes. This could take awhile...

Lift me up in your prayers... I know that's selfish of me to ask because you all have your own problems and concerns and don't forget world hunger... but I need to know I have an arsenal of support in prayer even though I am not big on prayer myself, this is all I can and you can do at this point... Perhaps this experience will change my beliefs about prayer and their power - This is not a challenge I am posing before God but a sincere fear and plea to use the only tool we know how to connect with Him.

Friends - pray for strength, pray for wisdom, pray for patience and pray for understanding... you can pray for a cure if you like but being the realist I am, I am going to set my sights on simpler requests...Someone once said that prayers should be specific - those are my specific requests to you today.

Boot Camp

All the materials I have read in the last three weeks have stressed the importance of education on the disease of Multiple Sclerosis. So when all the signs point to something, you start to listen. Currently I am rapidly reading "Multiple Sclerosis - A guide for the newly diagnosed." I would say I am half way through the book in about a week's time. Having a house full of family and other's needs to attend too, I am pretty proud of the 97 pages I have tackled thus far.

Being that I started this new journey in my life with a military theme - must be the true patriot in me - I am now in the boot camp or training phase of my battle. Reading is my best defense at this point as well as changing my lifestyle a little bit. I am trying to add vegetables to every dinner and I am making my girls eat or at least try the vegetable of the night. So far so good... everyone is benefiting from the realization of Adam's and my diseases. Boy was that a weird sentence to right... The benefits of MS and Diabetes... Could there be any?? Well my friends there are a few. Granted I would have preferred to change my lifestyle under different circumstances, this is as Hebrews and my dad would say, "the race marked out for me." Yes Dad I am listening when you share your wisdom - more than you know...

Ok so back to the battle... I have learned a lot about MS and my goal is to be an MS dictionary so I am well equipped for my next doctor appt on Sept 28. I am a busy person so I need my doctor's appts to be as productive as possible so I am going in there armed with as much knowledge about the disease and my options to dealing with it as possible.

I did have a visit with the lab about a week ago... boy that was fun. They filled 11 test tubes with my O+ blood to test for Lupus, Lyme Disease and about 15 other things... I will get the results of all that at my Sept 28 appt. I did learn that I am not so good with the needles anymore. I am not sure if it is the thought of giving myself daily injections or just the fact that I had been poked so many times recently that made the process of giving so excruciating for me this time. None the less, after a rest to avoid passing out, the lab tech was able to draw from my new super vein, as I like to call it - Come on you have to find humor in all of this or it will just drive you down the wrong path... Anyway I had always had a good vein in my right arm well turns out, it was tired of sharing so after 2 viles of blood, it gave up and so the tech and I were on the hunt for the new SUPER vein... Turns out it was in my left arm and completely sideways. He told me not to tell anyone else and to save it for him when I come back - Come back!?? Yes I am sure this is the first of many visits in my future...

Ok enough with the medical talk - I have a one true positive to share since developing MS. Yeah really this is a positive. So it is looking like I will be giving myself daily injections of this drug therapy called Copaxone. I will probably give it in my stomach - bet you are wondering what the positive is, right?!? Well I can't feel my stomach so I won't be able to feel the needles! YEAH! I haven't tested my theory yet so I will keep you posted but for right now, that is the positive thing I am dwelling on being that my compatibility with needles isn't top notch these days.

Oh yes the one other positive. Being that I can't feel my stomach - for those of you that had an epidural during child birth, basically that's how I feel all the time around my mid-section... I can't feel when my pants are too tight! How cool is that?!? Ok cool might be an overstatement but still another perk of my new life.

Ok enough with the humor, back to the battle planning. My spirits are up these last few days as I am getting my arms around the disease and its cause and symptoms. The downfall is that there are no two identical cases of MS - makes for a challenging cure that's for sure - So as my doctor put it when he told me the news, "Jaime this is your MS. Not anyone else's. Don't look at the people in the waiting room who are in wheelchairs. This is you and your disease." I know that probably doesn't sound encouraging to you but to me, it was - well it was a little bit. Probably my greatest fear at this point is losing my ability to walk and see. Crazy that I am 28 years old thinking about whether or not I will always be able to do the things I have done since the first year of my life... But believe me thinking about that daily would sink me into depression for sure so I have decided to just focus on what I can control - yes me the controller - Put it in front of me and I'll find a way to control it - a strength and weakness depending on the situation. My book said that I should focus on getting fit and staying fit. Well what do ya know?!? I am planning to run the Walt Disney Marathon in January! Talk about timing and a motivator. Right now 2 miles is the farthest I can run and who knows, maybe I'll end up walking the thing but who cares, I'll have finished a marathon - no wait, I will be a 29 year old woman with a five year marriage under her belt and going strong, two beautiful daughters and a chronic incurable disease! Wow! I am even impressed with my own statement!

So as I start to put on my armor for the battle against MS, I am also training to finish one of the many races marked out for me... And who better to finish that race with than my dad... An inspiring runner and father who forced, well sort of, forced us children to run a race when we turn 30. For some reason I decided to run a year early in case I wanted more babies which now looks dismal, and here I am with a chronic disease planning to participate in what Lance Armstrong called - HARDER THAN THE TOUR DE FRANCE! YEAH BABY!

Hebrews 12:1 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.