Band Aids and Bullet Holes

Band Aids and Bullet Holes There is a saying you will hear me say a lot. Treating the symptoms, and then treating the side effects of one drug with a second drug makes about as much sense as slapping a Hello Kitty Band Aid over the hole someone just shot into your chest. It will not fix the hole, it will not stop the bleeding, but it will cover it up if only for a second or two. You can still bleed out behind the Band Aid. When it comes to Multiple Sclerosis every doctor I have met has his own approach to Band Aids and bullet wounds. One gives me medicine to treat the symptoms of MS and another gives me medicine to treat the side effects of the first drug. None of it actually fixes the problem, and before you know it you find yourself taking 30 pills a day and you have no idea what pill treats what. Then you have the doctor who decides you are on too many pills, cuts you off of most, and within a year you find he has written you at least 6 new prescriptions, all in the name of science. I ended up cutting myself off of most of my meds and got to go through the ever so pleasant experience of withdrawals because I could no longer take the amount of poison I was dumping into my body each and every day. Another sad discovery I have made recently; when it comes to doctors and MS patients, the drug companies have convinced the doctors that you need to be on something to treat the disease. If there was any drug on the market that came with more than a 35% efficiency rating, I would possibly agree. However, this is not available. This also leads me to mention that although the great doctors take the time to diagnose the proper form of MS you have, most refuse to actually write it on your chart. There is a very good and bad reason for this. If you are not RRMS, your insurance will not approve any treatments because the FDA has not approved any treatments for any form of MS other than RRMS. There are 4 different categories of Multiple Sclerosis you can have. • RRMS- Averaging 85% of people diagnosed is RRMS (Relapsing- Remitting Multiple Sclerosis). This is where symptoms come and go or get worse and then improve over time. RRMS patients tend to respond well to not only steroids but also most of the DMDs (Disease Modifying Drugs). • PPMS- Effecting around 10% of the MS community is PPMS (Primary Progressive Multiple Sclerosis) I speak from experience when I say symptoms hit you like a freight train and never let up, though certain ones can come and go, and when you think it will not get any worse, it does! Doctors will tell you this is a slow and steady incline of symptoms; I will tell you that is bullshit! I will also mention PPMS is characteristically known to cause more damage in the spine than in the brain and one of the classic tests that determines this form is that you do not respond to steroids as it is not inflammatory. Well, you do respond, just not well. • SPMS- (Secondary Progressive) this one is a bit confusing, it starts out as RRMS and about 50% of people with RRMS will end up with a SPMS diagnosis within ten years. This is kind of like a combination of RRMS and PPMS. I feel this is more due to dr error as they are so quick to point to MS but not take the time to figure out exactly what type you have before they put you on drugs. • PRMS- 5 % of people who have MS are later diagnosed as PRMS (Primary Progressing Multiple Sclerosis). With PRMS, you have a steady increase in symptoms with the added unpleasantness of exacerbations (flare ups). I am not sure how the determination is made between PPMS and PRMS. Personally, I have PPMS (or so I am told) yet, I still experience exacerbations; somehow I am not in the PRMS category. My most recent trip to the doctor was as always, a major source of stress and frustration. I am not sleeping, when I do sleep I move constantly and I wake u p in pain. On a good night I get 4 hours of interrupted sleep. I have been on every sleeping pill they offer, and was on Ambien CR at 12.5 mg and was still ending up taking more than one if I wanted to sleep. Which of course lead to the other problem…running out of pills and not sleeping for half the month because they can only give you 30. If that wasn’t ridiculous enough, some moron in California wrecked their car and blamed it on the Ambien. So Congress intervened and decided no one was allowed to have more than 5mg. Dr changes my prescription to 5 and I slept for 6 days before I was out of meds. He was then able to increase it to 10 mg...woo hoo. Then he wanted to put me back on 12.5 but of course since Congress knows better than any of my doctors… my insurance denied it. I have been on this medication for over 2 years, my body has gotten used to it and it no longer works. I made the mistake of asking for something else. I was told no. Not because I am on too many medications, not because the next step is highly addictive (mind you I have been on morphine for 3 yrs), but because I refuse to go back on Tysabri. It does not seem to matter that Tysabri made me sick 2 weeks out of the month, and it ran a risk of killing me. None of that seems to matter because it stopped me from growing new lesions. I am not saying that all doctors are idiots and I am not saying do not try the DMDs. What I am saying is that you need to listen to your own body. You need to be able to determine for yourself if something is helping or not. This is a decision that you and only you have to live with. At the end of the day the doctor gets to take off his lab coat, go home and have a nice evening. You get to go home with not only this drug and all the effects of it, but the MS comes with you. It sucks, and there is not a damn thing anyone can do about it. Some people do great with the DMDs, and some do great with Tysabri. I hear stories all the time of people looking forward to their next infusion because it made them feel great and gives them energy. I was the opposite. I went home after an infusion and crashed, and then I spend 2 weeks fighting both a sinus and urinary tract infection. And any time anyone came near me with germs, I got sick. This is not an easy way to go when you have two children to take care of. I stopped the TY when I was sick almost a year ago with my 3rd round of the flu. Then I broke my foot and ended up getting surgery, then I broke that, and on and on for a year. I got 2 infusions between the 3 surgeries. And I got sick both times. I have finally come to the conclusion I would rather not spend my time being sick and I will just deal with whatever this disease throws my way. I tried Copaxone, had no effects from that at all until my MRI showed I grew 11 new holes while on it. Then I tried Avonex, which gave me flu like symptoms with every shot and then I broke out in hives because I turned out to be allergic. This knocked Betaseron and Rebif off the list because they contain the same ingredients. So we moved on to Tysabri. I feel like I have run out of Band Aids and my doctors refuse to allow me to live life the way that I want. Then I remembered that my doctor’s word isn’t law. In fact, last time I checked I pay them to provide a service, thus they work FOR me. And if they refuse to get on board and do things my way, I will replace them with doctors who realize I sign their checks. I do urge everyone to watch out for doctors who are quick to hand you a Band Aid instead of offering relief.

Today is a new day

Well, a lot has happened in the last few days. I was able to share my last two entries with my fiancé. And I learned that he is overwhelmed, frustrated, and filled with resentment for me. He doesn’t feel he can fulfill my emotional needs and he is just too stressed out to find himself. It was harsh. I cried for days. I felt every emotion under the sun. I felt like he just didn’t want to be here anymore. I think I finally hit the bottom.
And then, something amazing happened. I realized that I had spent the last year of my life filled with regret and guilt and sadness, and grief. And I realized that my lack of happiness had nothing to do with the people in my life, with my fiancé. My lack of happiness and my insecurities had nothing to do with the fact that he doesn’t want to be with me, that he doesn’t give me his attention. And I realized that my lack of happiness is probably the cause of all of this. I have been a miserable person and made him and everyone else in my life miserable to be with me. I need to change me. There is only one person in this world that you have the power to change, and that is yourself.
I have been so focused on getting through the days, on what I have lost and what I have missed out on that I forgot to be grateful for what I have. I forgot to enjoy what is still there. I was presented with a challenge. Now, my mom, though crazy, sometimes has good advice. She challenged me to think of 5 things I was grateful for every morning when I wake up. Instead of waking up and dealing with the pain and the frustration, she challenged me to first think about what it is that I am living for.
This morning I thought about my kids, my mom, my fiancé, the fact that I am still able to walk, and the cup of coffee I was about to make. Yes, I am thankful for coffee. I am thankful for being able to get out of bed and go make the coffee, even if the coffee is used to wash down the pills that make me able to get through the day. I am thankful that I have the doctors and the pills and the insurance to cover them all. I am thankful that even when times get rough, the man is still there for me, still by my side. I am thankful for so many things.
I am thankful that I was able to see just how miserable I had become and how it was effecting others. I know that may sound weird but it is true. I took a step back and realized some of the idiotic things I had been doing. Nagging about dishes not being in the sink, nagging about laundry not being in the hamper, angry that he didn’t want to be around me when the truth is, I didn’t even want to be around myself.
It is time to find my happiness. That part is easier said than done. I don’t know where my happiness is. I am determined to find it. I need my own happiness, and no one else will ever be able to give that to me. I need to find my joy in the little things in life, and I need to learn to let go. There are things in this world that I cannot change. Life is not fair, sometimes it sucks. But life does go on. I need to believe in this. I need to go on and stop getting stuck and caught up in things I cannot change.
The man is leaving me for a few days tomorrow. Finally taking some time for himself, to go hang out with the guys and just get away. I am so glad he is finally taking a moment to himself. I don’t know how things are going to be in the future, I don’t know if he will find his happiness, I don’t know if he will be here for me. But I know that in the same way he cannot give me happiness, I cannot give him happiness. Neither of us are ready to walk away from the life we have together, and I sincerely hope we find a way to work together. But that is not something I can force, it is not something I can predict and it is not something I have control over, so I need to take it one day at a time.
I am not cured. The depression is still there and probably always will be. I have a lot of insecurities and I didn’t grow up in a home with a normal or stable family atmosphere, so this is all new to me. A lot of times, I don’t know which way to turn and I question myself a lot. But these are things I need to work on for myself. I have always had control of every aspect of my life and that has all changed in the last 2 years and it is scary. There are times when I am going to be scared, I am going to be insecure, I am going to be sad, but I need to find a better way to deal with it. I need to stop wishing that I had the option to get away for a few days, because this will never happen. My problems are inside of me and they come with me wherever I go. So my new goal is to figure out how to live with it.
Writing seems to help. I think it is because I am forced to sit down and actually sort through my feelings and focus on them one by one. So I will probably be writing a lot more. And I will probably be doing more girly things. Like wearing makeup and doing my hair and nails. Not because I feel the need to impress anyone but because it makes me feel like a girl. It may seem like a small and stupid thing, but it is something for me. I need to stop bumming around the house in my pjs all day and I need to be more productive.
At the same time, I need to recognize the triggers and I need to deal with them. I need to not overdo things and end up fatigued to the point of exhaustion. I need to let my body heal what it can. Yes, I realize this whole thing is I need, I need, I need. But at least I am starting to figure out what it is I need. Hopefully, from there, I can begin to tackle the needs and in the end find my happiness, which is what I want.