I'm sitting here tonight watching the television program Private Practice, where one of the main characters is in labor and refusing medication to ease her intense discomfort. As I see her racked in pain, crying, it takes me back to what happened at the end of March with that horrible kidney stone. I was in more pain than I have ever experienced and was terribly frightened that it was the MS attacking me, but in a way I had not felt before. Just the memory of that day/evening has me crying more than I did when it happened. I realize being in labor is probably more intense than having a kidney stone, but at least you are somewhat aware of what is happening to your body and afterwards, you get to hold your precious baby!
This entire month hasn't been what I would call ideal. Try as I may, I have not been able to get through to my general physician's nurse to make an appointment to see him to discuss my low blood pressure. At a friend's suggestion, I called my endocrinologist's office and am scheduled to see one of the nurse practitioners this Thursday afternoon to address this issue. I hope a solution can be found as I am growing tired of feeling exhausted every moment I am conscious.
I spoke with a representative of Tysabri's Touch Program, the support program for those of us on this disease-modifying drug. I was curious to know if having continuous low blood pressure was a common side effect of being on Tysabri or if I was in the low percentile, as is usually the case with me. I already knew it was common for blood pressure to drop during or after the infusion but I wasn't given much information other than that. I will need to address this with Dr. Short (neurologist) when I see him next month before I receive the Tysabri.
I was extremely happy last week when I was able to drive but this week has proven to be less thrilling. I was scheduled to see my chiropractor yesterday but was unable to drive due to my right leg feeling as if it weighed a ton and experiencing too much weakness after walking only a few steps. My parents had been out of town most of the day so I changed the appointment for today, which I ended up cancelling since I was not feeling too well because of my low blood pressure. If it's not one thing, it's another!
To make my life just a little more interesting, a physical therapist is coming to my home tomorrow afternoon so we can begin my new program. Ugh. Good timing! I'm sure I won't be up to doing too much while she's here as I will let her know what has been going on with me health wise, but at least it's a step in the right direction. I've grown tired of hurting from simply making myself a sandwich or getting a cup of coffee.
I do hope the rest of the month shapes up better than it has been, but only time will tell. I can't wait to have another batch of good days again or at least one or two decent ones where pain is the last thing on my mind. Ahh, how nice that would be!
I have chosen to remain single but this doesn't mean I haven't had thoughts of what it would be like to have a long, meaningful relationship. When I meet a man and we decide to date exclusively, my mind automatically wanders to a long-term commitment and perhaps even a lifetime with this particular man. For me, it hasn't quite worked out this way and as the years go by I really do not think it ever will but I haven't closed my mind to the possibility of it happening.
When I look back at my dating life I seem to have made the same mistakes over and over again. There is no doubt that I am confident in who I am as a person but this confidence does not extend over my entire life. I am used to making my own decisions in my daily life so when a man enters the picture, there is a huge shift in balance. Since my income is extremely limited and the food I keep in my home is quite scarce, new man and I usually go out to eat meaning he will pay for our dining. This is nice at first but not too long after, causes me much stress. I find it very difficult to choose where to eat or what to order, knowing the expense will be on him and not on me. I do not like to take advantage of anyone's generosity, even if he (or my parents) tell me they don't mind. But it bothers me. It bothers me a lot. And this is just the beginning.
Both times I was married there was too much conflict. We argued incessantly and it brought endless headaches, migraines, stress and frightened kitties. I never want to live that life again and I won't. I do my best at "screening" the men I go out with ahead of time so I have an idea if they are the argumentative type or more laid back.
Once I am in a relationship, the worst thing I do is become too agreeable. It is never the man's fault, but completely my own. Honestly, he never has any idea I am doing it, but all the while I'm cringing inside as I lose my voice more and more with each passing day. The problem is, I can't stay silent forever. However, I do try to talk about things along the way to give some insight as to how I've been feeling and a few times, some of the men I've dated have realized that I've been "giving in" to simply doing everything they enjoy or watching only television shows or movies they prefer over mine, and encourage me to include them in my preferences. If he doesn't try to listen to what I said, well, then all hell breaks loose. I eventually blow up at the man and this is never a pretty sight for anyone to witness.
I'm not making myself seem too wonderful here but I am hardly a terrible woman to date! I'm all heart, wear my heart on my sleeve and would still love the "happily ever after" fairytale sort of romance but I suppose the realistic side of me doesn't allow this to last for too long. Yet I still love with all my heart and give as much of myself as humanly possible, but I suppose being 43 years old has something to do with the somewhat pessimistic attitude I've acquired. Most relationships end and this is simply a fact of life. I have enjoyed my time with each man I've been involved with and then moved on after the relationship ran its course.
When I think back at the loves I've had in my life, there are very few who really took my breath away and simply remembering the feeling is intoxicating even after all these years. I long to feel that way again. To feel my hand in his. To look into his eyes as he is gazing into mine. The aching need of his mouth against my lips. Just to know he is sitting next to me or thinking of me when we are not together. Every little feeling which would make me feel as giddy as a schoolgirl once again. Will it happen for me? This, I do not know but at least I know I have had love in my life and my life is good but if he is out there, why won't he hurry up and get here already?!! I mean seriously, I am NOT getting any younger so please stop biding your time, OK?
After probably around seven weeks, I finally drove my car again, both Wednesday and yesterday. It was wonderful.. especially yesterday. I drove my car when mom and I went to my neurologist's office for my infusion on Wednesday and it felt good but when I drove alone, wow, it was beyond words! Alone means I can smoke, open windows as wide as I want and turn my music up as loud as I like. I realize, however, my legs aren't strong enough to drive all the time, mostly since after parking the car I still need to get out and walk to wherever it is I went in the first place. Therein lies the problem! Mondays and Thursdays are my chiropractor days so if my legs feel strong enough, I'll be driving myself since my walking is minimal on those days. Otherwise, it wouldn't be a possibility. But wow, I felt so alive behind the wheel again.
My parents surprised me a few weeks ago by asking me if I would object to having a water softening system put in my house. Are you kidding me? I have not only wanted this but NEEDED it for as long as I've lived in my home, which will be 10 years next month. I had not been expecting such a gift and was very grateful to them. My dad installed the system this week and the difference has been incredible. After washing my hair, all I can say is oh, my goodness.. my curls look wonderful! Yes, I am once again in love with my hair, especially after it has been returning to it's lackluster state the last few weeks. Hey, it's all about the hair!
I was chatting with my best friend, Krissy, on Facebook earlier this evening and she asked me if I've decided to become old because of my MS. I have to admit that I was taken aback by her saying this when nothing could be further from the truth. I simply replied that maybe it seemed that way in my blog posts because I've reached a different level of acceptance than before and really have no hope of a miracle cure. I've made my peace in having multiple sclerosis for the rest of my life, no matter how miserable it may be. I suppose I come off as far more serious than I really am here on my blog as I am honestly much more humorous, silly, extremely outspoken and have a very quick wit in "real life." Does this come through in my posts? Hmm, I'm not sure if it does, but there are many sides to what makes me, me. I most definitely have a serious side along with much compassion, love and understanding. Oh, and I still love my hair! :)
I'd like to end this post on a lighthearted note. Remember, life is too short to be serious all the time and I really do laugh.. a lot! I hope I don't offend anyone with this pic.. please enjoy it because it's funny!
I don't like posting so late at night but it seems to be around this late hour when thoughts hit me so I'll just go with it. Who am I to argue with myself? I'm rather cooky but I'm hardly insane!
My sixth Tysabri infusion was today (technically yesterday but since I haven't gone to bed, it's still Wednesday in my mind) and I have yet to decide if I want to continue with it or not. Before my seventh infusion next month I have an appointment with my neurologist to discuss how I feel I am doing and what his opinion is on this, too, so things may change. One thing I'm already a bit upset at with him is that he cancelled the MRI's he had wanted me to have before the next infusion and appointment. He prefers to see me first and maybe then order them. This does NOT make me happy in the least but if I have to wait, so be it. I'm sure I'll get my way in the end. I refuse to be silenced when he is the one who is working for me and not the other way around.
While in the infusion room I was able to talk with my neuro's nurse, Melissa (she is such a doll!), about a few problems I've been having lately. I mentioned the extreme lack of appetite or desire to eat, and also how my blood pressure readings have been quite low considering I have been on hypertension medication and I check my pressure both before and after medicating. I plan on calling my primary care giver tomorrow to make an appointment and see if he wishes to lower my dosage from 10 mg. Lisinopril to 5 mg., take me off the medication completely, or suggest something else. My average readings have been 100/62 and I don't wish my blood pressure to get much lower than that. After speaking with my neurologist, Dr. Short, it was decided that rather than taking 3-25 mg. tablets Topamax in the morning and evening, I should change it to 2 tablets in the morning and night instead. I'll see if this helps with my appetite yet still keeps those nasty headaches at bay.
When Dorraine and I took Emmi Sue to the vet yesterday, I had one of my favorite Bolivian CD's playing in my car. The group was Proyección which features Boris as lead singer, the man who was my first love and I was in love with for well over a decade. It hurt to eventually let him go but when I did, I was finally able to enjoy his voice and music again and I'm so glad that happened.
Everyone has songs that bring back memories or remind them of a certain person but for me it's far more than that. There are dozens upon dozens of songs that Boris sang to me during two vacations in Cochabamba, Bolivia and although I used to cry when I heard them, now I smile at the memories and relish in the love we once shared. You see, he was already quite well known in Bolivia by my the second time I saw him in 1996 and as much as we loved one another, I didn't want him to ever think of me as just another girl who only loved him for his voice. It was much more than that. I had met Boris in 1993 and it's true that I met him because of his voice but I fell in love with the man behind the singing and he fell in love with me. I'm a woman he will never forget as I did not give in and sleep with him as I'm sure many others did and have since then. I guess you could say that keeping our love "pure" is what has kept it so beautiful in my memories and is also why I can think of him as sweetly and smile as I do each time I hear him sing on the CD's. At least one, if not two, of the songs he has written have been to me and I still get goosebumps when I listen to these songs.
I'm not sure exactly why I'm writing about my music or about him tonight except that to know me is to know how passionate I am about every aspect of being Bolivian. It's a part of what makes me who I am and I love it. There is no music on earth that speaks to my heart and makes me feel as if I'm soaring far above the earth as my beautiful Bolivian music does. It is simply breathtaking.
In my daily life, I find enjoyment in three basic things. They are things I have come to depend on but lately, one of these enjoyments have been lacking and even though I shouldn't be terribly upset over this, I am. I take much joy in my cats, smoking and food. I no longer enjoy food and you would think this would be a good thing as I could stand to lose a significant amount of weight, but it is quite the opposite.
When I get up each day, I have one cup of coffee along with a serving of Greek style yogurt. I started having this type of yogurt after my energy levels were extremely low half-way through the day and realized it could have a lot to do with what I was eating for breakfast, which had been either a small bagel or a serving of oatmeal. Neither was a terrible breakfast, but I was left feeling drained of the little energy I have most days by 3 or 4pm (I usually get up around 11am and eat by noon). Once I had this yogurt as my first meal the difference was incredible, largely due to the 12 to 13 grams of protein in a 5.3 to 6 ounce serving.
Even with this protein-packed yogurt for breakfast, my energy has been less than adequate and has left me wondering what else could be going on in my body. I spoke to my psychiatrist about this today at my appointment and also mentioned the somewhat low blood pressure readings I have been getting on my monitor. This evening, the reading I had was 100/57, which is definitely a bit lower than I would like. The highest I have had since last Thursday has been 104/70, which makes me wonder if I am indeed hypertensive enough to be on Lisinopril, a medication used to treat hypertension. I will mention this to my neurologist on Wednesday when I go in for my Tysabri infusion as I am not feeling quite myself lately and I really want to enjoy food again!
Actually, the lack of food enjoyment is probably a side effect of my anti-depressant and increased dosage of Topamax. I don't mind feeling less hungry but this is getting ridiculous. Nothing is appetizing anymore. When I first mentioned this to my mom she thought it was wonderful to not want to eat, until I explained that I wasn't getting enough nourishment because of this lack of appetite. She hadn't looked at the big picture and soon realized that there was more to it than simply not being hungry.
My weight has been an issue my entire life and it probably will be until the end. I'm 5'6" (I used to be 5'7" but have already shrunk an inch!) and wish I weighed at least 80 lbs. less than I do, but I've come to terms with my weight and am happy I carry it as I do. To look at me, you would not guess I weigh as much as I do and this, at least, is of some consolation. This is also the reason why I don't find it necessary to share my exact weight since the number does not tell the story, although I am also not ashamed to admit to that number. No, I take that back. I am ashamed of the number but do not dwell on it obsessively as it does not represent who I am.
Even with my not-so-healthy-relationship with food, I would still like to enjoy it again and hope my neurologist will be able to give me some helpful tips or advice on this. I may need to cut back on the Topamax dosage and I am more than willing to do this, as long as the headaches I was once plagued with do not return and eating becomes a bit of a pleasure again and not a chore.
I haven't written about my MS too much in recent posts, as I'm sure most of you have noticed. I wish I could report that I have been feeling much better but this would not be the truth. I am not one to spend my time whining or complaining, although when I take time to look at some of my older posts, it sure seems that way! What I prefer to do is focus on other aspects of my life when things are somewhat bleak or getting overly monotonous. And honestly, my days have become extremely, mind-numbingly dull. I'm still unable to drive, the pain in my hips, pelvis and lower back have not changed and my fingers have grown more numb each day. Yeah, that pretty much covers it. On a good note, the terrible headaches I was having a few months back have stopped since my neurologist doubled my Topomax dosage.
At my appointment with the urologist on Friday, I was told that the kidney stone was not visible on the x-ray but this did not mean it wasn't in my body. I am still having trouble emptying my bladder but since I have had this problem over the years because of the MS, it's impossible to know if it's due to a stone or not unless I have a CT scan. Since I have decided to pass the stone on my own without surgery, what's the point in having my insurance pay for a CT scan? It seems extremely pointless and a waste of money so unless I do not have any relief or pass the annoying stone in the next month, nothing will be done and this is fine with me. My urologist prescribed a few catheters, at my insistence, so I have them in case I'm unable to go on my own. I hope it doesn't come to this but at least I've learned how to catheterize myself in the past and it is no longer as devastating as it was once before.
This week is filled with all sorts of appointments for me. Tomorrow, I see my psychiatrist and the chiropractor soon afterwards. At least I can say my psychiatrist is a very nice lady who actually listens to me and works with me rather than working against me, as my previous shrink had done. On Tuesday, Emmi Sue goes back to the vet to see if her blood sugar levels have gone down but I don't believe they have. I worry about her so much and am concerned that perhaps something more serious is wrong with my sweet little girl. Then on Wednesday I go in for my next Tysabri infusion, which takes up a few hours of my day and leaves me feeling as limp as a wet washcloth. I finally purchased a blood pressure monitor so I can check to see if it is my blood pressure that is affecting my energy level after the infusion or if it could be something else. Knowledge is power!
To see who I am today, as opposed to how I was years ago, is truly a complete change in perspective. I used to accept most things at face value and not question anything whereas now, I question pretty much everything. I don't feel this is a bad way to be as I've chosen to seek knowledge above merely taking what people say as "gospel." When I'm at the doctor's office, I ask why they want me to take certain medications, what benefits there are for me.. I want to know everything. And if they cannot give me sufficient information, I do the research on my own. Heck, I'll do the research on my own anyway! I will always dig a little deeper so I am more knowledgeable and can make a more informed decision on most anything.
It was different, however, when it came to choosing to become an Atheist. When it no longer made sense for me to be a christian, I spent a lot of time questioning, talking to myself, looking at it from many angles and finally decided that it was not right for me any longer. It was actually one decision I made without any outside influence as I did no research on the subject. The choice came from me and no one else. I had not realized what a large community of Atheists existed until a few years after joining Facebook, but most have different views than I. Most have based their decisions on scientific facts but since I have very little schooling and cannot contribute much when it comes to any such facts, my choice came from my heart and how I felt when I was following a religious path. I feel much better about myself and truer to who I am now that I have embraced Atheism. I am aware of the negative connotations the word "Atheist" carries and I wish this wasn't so since I am no different than anyone else except that I find all the strength I need in myself, my family, friends, cats and life itself. I read somewhere that Atheists are hated, in the USA, as much as rapists and pedophiles! This statement is completely outrageous and I sincerely hope those who read my blog do not feel this way. From reading my posts, you can see that I am hardly a terrible person, nor am I lost or in need of any sort of salvation. I am simply who I am.. just Lucy. And I am a woman with MS who happens to be an Atheist. I also happen to absolutely adore my three beautiful little kitties and would give my life for any one of them. If this makes me a terrible person, well, then so be it.
It never ceases to amaze me how I can come to my blog with the idea of writing on a particular subject, when I suddenly find my mind taking a complete different direction than I had imagined. This is what happened with my last post, although I am quite satisfied in how it turned out.
A few days ago I started writing about how when I was in high school and began college, my dream was to either be an English teacher or a writer and how the dream was sidetracked by my self doubt and other happenings in my life. It seemed my so-called dreams never came to fruition and I always blamed it on things beyond my control. But was it really not my own fault?
I will never blame myself for not returning to college right away as it probably would have been a tremendous waste of money for both me and my parents. I did, however, decide to enroll in a travel program which took only four months to complete but the classes were long and very in depth. I LOVED travel school! I began travel school in September 1992, but how was I to know this was going to be one of the most difficult times of my life? I remember so clearly the moment the worst exacerbation of my life began, thus far. My entire family and I had gone to Chicago (three hours away) to attend my cousin Randy's wedding. On the way back, I was in the car with my dad (we had taken two vehicles) when my legs began to stiffen up and hurt as they never had before. I was listening to one of my favorite cassettes, Little Earthquakes, by Tori Amos and the pain became so unbearable that I asked my dad pull over so I could step out of the car. The intense heat and humidity of the day didn't make me feel any better so I got back in and we kept driving forward until we arrived home.
A month and a half after beginning the travel program, I lost almost all my eyesight and spoke with my instructors, who "owned" the program, and they allowed me to drop out as long as I promised to restart as soon as I was well again. I was devastated and depressed beyond belief that I could hardly see and had lost almost complete use of my legs just two years after my diagnosis. All I could think was how crippled will I become if it's this bad already?
In December of 1992, my parents gave me one of the best gifts ever. They told me if I went back to school and promised to do the best I could do, they would send me to Iceland to visit my best friend, Krissy. Are you kidding me? I finally had inspiration to do whatever I could to feel good again! My eyesight had already gotten somewhat better so I had re-enrolled in the travel program and finished by the middle of April 1993. A few days later, I was in Iceland for five wonderful weeks with my best friend. I was walking with a quad cane and took my wheelchair in case we went on any long outings, but I was thrilled out of my mind to finally spend time with her and her family.
OK, so I went to travel school and know what? I've never used the knowledge I gained in going there. I SHOULD have used it, but just never gave it a chance. I tend to do that a lot in my life. I suffer from a terrible thing that I have found many others do, too. I am not afraid of failure. I am afraid of success. Wait. Allow me to reword that. I used to be afraid of success. I don't believe I am that way anymore. But I also don't have dreams now so I honestly can't say for sure if I am still that way or not. It's funny how we change over time.
I don't find it sad or disheartening to say I no longer have dreams. It's just the way it is for me. I suppose I find myself engulfed in too much reality to allow myself to dream anymore, yet I find happiness in the tiniest of things. Am I making any sense to anyone but me?
Once upon a time, I dreamed of seeing as much of Europe as possible but I know that is no longer a possibility due to lack of funds and lack of mobility. I have accepted this. And how I'd love to see Egypt, especially Alexandria and see the places Magdy had seen and walk the streets he must have walked hundreds of times. Instead, I choose to live vicariously through the travels of friends and family and revel in their happiness as I hear of their adventures.
At the beginning of my blog I said something about blaming things that didn't work out on circumstances out of my control. I mostly did this with my weight and appearance. Why didn't guys like me? I wasn't thin enough and that was it. What I didn't realize was that confidence is sexier than physical appearance and dieting and then failing wasn't getting me anywhere. Yes, I needed to lose weight and become healthy (and still do), but not to get a boyfriend! I needed to do it for me or not do it at all. I didn't want to take command of my own life whereas now, I take responsibility for my own actions whether the outcome was positive or just the opposite.
