My Shoes

               Today we baptized my godson Sammy. It was a beautiful day and he was such a good boy today. Afterwards we had a family party and it was nice to see all my extended family. We all had a good time. Ok now that I got the mushy lovey family recap out of the way on to my favorite subject…ME! Being asked to be a godparent in an Italian family is a very high honor, I was bestowed that honor. Nothing is more important to the godmother than the outfit in which we baptize our godchild in. I took this challenge as serious as finding one to baptize my own children. I found a nice light summery dress, and I got it on sale. SCORE!

                Next challenge, the shoes! Apparently finding shoes is a big problem for me for the last two years. Ok here’s a recap, one engagement party, three showers, two weddings, a rehearsal dinner, a baptism, and a partridge in a pear treeeeeeeee. All events I needed to purchase dresses for and also events I needed shoes to go with said dresses. Since I wear sneakers all day every day and I have no strength in my legs to support a high heel this was not an easy task. Sparkly black sneakers were nowhere to be found, flats and flip flops were my only option; until yesterday. I found the perfect pair of wedges to match the dress, on sale! Score again! I wore them today…all day. I now sit here with burning pain running from hip to ankle and back.

                I have a natural talent to turn a wonderful day into a complaint. That’s why you all love me.  Debbie Downer is back. I think I looked retarded but I guess I have one of those fun house mirrors because the consensus said otherwise all day. Thank you to my family for the much appreciated and needed ego boost. The shoes definitely helped. I was up till six A.M. and was very weak today so walking in these lovely shoes was a bit hard. I prayed I didn’t fall in church today. Hahaha, no pun intended. So I made it through the ceremony on two feet and upright. The party is another story, I did have a few trip ups so I ended up in my seat for most of the dinner. And now we are home burning legs, numb hands and all. It was truly a great day though.

Minor Setback

       Multiple Sclerosis is such an unpredictable disease. I’ve said it before and I’ll say it again…it sucks. Here is a perfect example, the past week. I went to the doctor Tuesday of last week and at that point was in pain, weak, off balanced and walking with my sparkly cane. The doctor gave me the note to go back to work that day and by Wednesday afternoon I was cleared by work to return. Friday I returned for my first shift, still in pain, numb, weak and even more off balance but I decided to leave the fabulous cane in the car. By Friday night I became one with a coworker’s car in the parking lot. On to Saturday, yep you guessed it the cane returned. Friday and Saturday were the worst two days I have had physically in a while. Sunday was a day off work but no rest due to a fun family get together. Even though I worked two nights in a row I woke up with energy for the first time in almost two years. Monday was another night at work feeling great with no cane and little numbness and weakness. Tuesday was almost as good as Monday. Hello Wednesday how are you? Oh thank you for brining pain and fatigue with you, I see you spoke to your buddy Thursday and gave him the worst of it. Thank you both.

                A running theme of MS is how quickly things can change. Felling good three days in a row is all I am aloud apparently. Not only am I exhausted my body hurts AGAIN! One would think I might use my two days off to rest…well you thought wrong. Unfortunately it takes extreme measures for me to admit defeat. I ran around for the last two days. Why; because I have a life and need to get things done like buying food for my children to eat every day. I don’t like starving my family you know; it’s bad for the digestive system. So here I am Thursday night, kids asleep, husband still working and I am not resting; I am writing and cleaning in between. Back to work tomorrow. I am hoping to wake up with no pain in my hands and knees and have some sort of energy. If not coffee and I will have a great time tomorrow.

My Shakey return...

              So unfortunately I was forced to return to work Friday, Saturday, Monday and Tuesday.  Friday and Saturday were very bad days for me to the point that my cane wasn’t even helping. Let’s just say I became one with the gray car in the parking lot Friday night. I woke up Monday feeling pretty good; it’s amazing what a ten degree change in temp can do. No cane, no fatigue, running all over the unit all night. I impressed myself. Today I am tired but I have to go food shopping so no rest for this chick today, maybe tomorrow.

                It felt good to return to work for a few reasons one being I get to spend time with grownups. It also felt good to see everyone missed me and is concerned about me. All I heard for three days is how good I look…we know how much I love hearing that. I was also told many times that I looked pretty. I have come to the conclusion that I looked like a horror movie monster before I went out on disability. This was apparently true cause when I asked a few friends some of them nicely confirmed it. I felt especially loved by (shout out alert) Erin last night, every time she passed me she hugged me. It’s too bad she is leaving our unit to become a nurse on the floors, but I am proud of her. With all the well wishes and welcoming back also came the realization that all the stupid petty crap that was going on when I left is still going on now. There are a few people that need to graduate from high school and put on their big boy and big girl pants now.

 Anyway, even though I have returned to work does not mean I am better; I just had to come back. I honestly was not ready. My hands and legs are still very weak and this heat kills me. Let’s not ignore the fact that my CRS (can’t remember shit) is getting worse and I find that I have trouble speaking lately. It’s like the words are there but my mouth doesn’t know how to form them sometimes. Talk about frustrating. One thing resolves and three more pop up. Oh well this is the perks of Multiple Sclerosis. Another lovely perk is the hour and a half MRI that I get to endure once a year…that’s next week folks. Stayed toned!  

Meds Suck

So I paid my good old neurologist a visit yesterday. Oh boy do I love driving into the city and looking for parking. I have paid so much money in co pays, medications, and parking in the last week it’s crazy. I have a lot more city driving to do in the coming weeks. I sat with my doctor and explained what I have been feeling and what’s been going on in my life the last two months. He suggested new MRIs from head to toe. Let me suggest that anyone looking for a food time lay in an MRI machine drugged up for two hours…woohoo! Good times people, good times. I am so looking forward to it. It is also time for my six month check up with my neuro ophthalmologist to make sure the medication II am on is not causing macular edema. Then on to my dermatologist to make sure the meds are not causing any melanomas. Then another trip back to NYU for test results and more treatment discussions. Yesterday’s appointment added one more pill for me to take every day. Will somebody come up with the damn cure already please!

It is crazy how one med to help something creates so many other issues. Sometimes I feel it’s not worth it to take the medicines because of the major risk factors involved. Alas I have tried going without and have found that I am not one of the lucky MS patients who can do that. My daily medication regime is now up to five different medications on a daily basis. Yea! Party at my house! It is at the point where I need a pill case to make sure I take all the right stuff every day, like an old person. My kitchen cabinet has now turned into a medicine cabinet. Let’s not forget the vitamins I should be taking but can’t remember to buy, vitamin D, biotin, a multi vitamin. And then there are the days where I feel crazy and think Tylenol or alive with help get rid of some pain, silly me. I feel like a walking pharmacy.

Ok so back to the doctor visit. I like my neurologist and would recommend him to anyone, I just wish he was on Staten Island. It is true; the good ones are in the city. So as I said we discussed treatment and he added a new medication to my arsenal. He has also been mentioning doing IVIG treatments which is a monthly infusion designed to make you feel better. The other medication I am on is designed to slow if not prevent disease progression. I am considering going on this course of treatment. I am forced to go back to work due to the fact that I am not a millionaire and my disability benefits have run out. Apparently I am not having relapses, I have never completely recovered from the last one I had and the heat is making existing symptoms worse. I was not one of the “complainers” on facebook wishing for the summer and this is why. The heat is detrimental to me. Now I hate the huge amounts of snow we had but I don’t mind the cold one bit. My electric bill also suffers along with me. Being on the second floor with a broken attic fan, my AC never shuts off. The doctor also recommended talking to the staff psychologist to which I replied NO. I don’t like talking to people like that, I rather bitch and moan to those who know and love me. I also told him I created this blog instead of talking to someone. I much rather write than talk even when I’m in pain. I must keep my public happy. ;) 

My Stages

1. Denial & Isolation

2. Anger

3. Bargaining

4. Depression

5. Acceptance

                So I have read that there are five stages of grief which is what I have listed above.  Greif is not just a process of losing a loved one; it is also a process of dealing with bad news. I am grieving. I am grieving because I have lost something…my health. I found out I had MS before my doctor actually told me. I read my MRI reports that had stated it. That is one of those things you never forget. I was leaving the radiology place with my mother. We were waiting for the elevator and she was looking at the brain scan and reading it out loud. All I remember hearing from her mouth was the sentence “lesions consistent with Multiple Sclerosis.” I immediately started crying. Two days later my neurologist confirmed it for me. It is a huge punch in the gut.

                A few people that have been reading my blog have pointed out to me that I should look up the stages of death and grieving, both very similar if not the same. So I looked it up, I think I skipped stage one denial because I kind of knew before I was told. Stage two anger; oh I am definitely stuck in this stage along with beginning of stage four which is depression. I walk around a very angry and bitter person lately, that’s not me. I am also feeling depressed, I don’t want to do anything or talk to anyone at all lately. I just want to be left alone. These feelings are not sitting well with me.  No I did not skip stage three, the bargaining stage. I bargain every day with God, the saints, everyone I can think of. Almost everyone, I hate the heat so I have yet to get to the devil, trust me it’s getting that bad though I just might. Hey there’s always air conditioning. Getting back to my anger and depression, I started this blog to give people a glimpse into one persons struggle with MS. Little did I know that this would be a great stress relief as well. I find the worse I feel the more I want to write. The pain in my hands and arms is excruciating right now but this is a mental relief for a brief moment until I wake up and start it all over again. Thank you for being interested and supportive which keeps me writing.

Moody Sue

It makes me laugh to see how many people can work the system”. Ha  ha  ha ha ha ha…please my sides hurt. Any who, I love walking around and seeing these people who have nothing at all wrong and walking around living a care free life off my money. It also amazes me that I work so hard for years and now that I am not able to work I get kicked in the ass for it.  I am out of my MS medication and still trying to get coverage for it. This is a joyride that has lasted two months now. Why is it so easy for a lazy person to claim mental disability but people with crippling ailments can’t even get necessary medications? It is a state law that all diabetic and cancer medicines have to be covered; it should be mandatory for all lifelong medication. Why do we have insurance if they are just going to put a yearly cap on coverage? It seems like it’s easier to get away with murder these days then it is to get necessary treatment.

                No I am not a happy person lately. No I have not  been feeling well lately. Yes I am tired. Yes I am bitter. Hell yes I am angry. I feel defeated. I want to lock myself away from everyone and everything. It is painful to get up in the morning and even do minimal activities. Even though this all goes on in my head and body I have a family to take care of. I am still a mother and a wife. I still vacuum, do dishes, wash floors, cook meals. I do almost everything every other mother and wife does every day, except the garbage not my cup of tea. I do normal everyday activities; the difference is I do it as I cry in pain on the inside. I do it as I lose balance and fall into cabinets or down stairs, but I do it. I do it because I have to. I do it with or without medication. I prefer with but unfortunately I am currently being forced to do without.

More Summer?????

     How you feelin? HOT HOT! How you feelin? HOT HOT HOT! So we are almost midsummer and I do not like it one bit. I am changing the name of this blog to the downer files. Back in December, January, February, etc everyone was wishing for the warm weather. Not me, I like the cold but can do without the snow. The moment my body gets over heated it’s like a car, it doesn’t want to run. I have been noticing since last week a steady decline in my health. I now have developed high blood pressure, the pain in my hands is at times unbearable, and my legs have gone back to feeling like Jaba the hut is sitting on each foot.

     I am not having a pity party this time though. I still manage to get things done like food shopping, vacuuming, even making the beds and dishes. Oh yea and taking care of my little guys one of which was in the emergency room Saturday night with high fever. It turns out he has coxsakie virus. I don’t know where he got it from. Anyway he is on the mend.  I feel worse for my kids than myself right now. They are stuck in the house with me because I am unable to bring them out in this heat. Can we say cabin fever?

     Now back to your regularly scheduled complaining. I have realized that the last two years of my life have been filled with crazy bad luck. I guess if it wasn’t for the bad luck, I wouldn’t have any luck. I am still unable to work and my disability runs out this week. On top of that I am still trying to get coverage for my medication which I just took the last dose of. Worried you ask; just a tad. I have become very quiet and introverted with my feelings; maybe this is why I have high blood pressure and chest pains lately. I have come to the conclusion that it is not in God’s hands; it is the universe that likes to fuck with me. I realize that praying, begging, pleading, complaining, venting, arguing, however you want to put it doesn’t help; so I have decided to keep it to myself from now on. May be if I become an alcoholic or a sneaky conniving bitch like a few people I know I might get what I want and feel I deserve. Bitter you say! You bet your ass I am. I have been a good person my whole life. I haven’t done anything out of the ordinary to piss off God or unbalance the universe. Like I said before I’d make a deal with the devil but I hate the heat. Maybe if he moves to Alaska we’ll discuss.

My Stress list

    So my mother’s catheterization went well, as well as could be expected. My mother had a triple bypass eight years ago to be exact and now she had two stents put in. One artery had three major blockages. This is a result of not doing what the doctors told her to do. She is home and doing better with a nice rosy hue. One thing to check off the list of stress. We also got the rehearsal dinner out of the way. Unfortunately as my luck always goes it did not go smoothly. Today was also Danny’s second birthday and he woke up with fever, by the time we got to the restaurant tonight he was burning up and then proceeded to throw up all over…you guessed it ME. My poor baby. For every one thing I cross off my stress list two more pop up.

     Here’s the silver lining; oh wait there isn’t one yet. I can officially say I have started using my cane again, whomp whomp. I’m not very thrilled about it but I have gone too long pretending I don’t need it again. At least it has pretty rhinestones on it so it will look good with my dresses at the weddings this weekend. Oh yea, there’s my silver lining! While having to give in to the can again is not easy for me to accept, it is also not easy for me to use since my hands hurt so bad it’s hard to hold it. So like I said for every one item crossed off my stress list we add at least two more.

     Let’s recap shall we. Two weddings and a rehearsal dinner in one weekend, mom’s heart trouble, mom’s other health issues, still looking for doctors for the kids, not working and still poor. Now let’s add the new which is just old making a comeback. Major joint and muscle pain, legs that feel like they weigh 200 lbs. each, back pain returns, fatigue likes to come around now and then, and let’s not forget the numb hands that hurt and are now swelling and the painful wrists. I can’t remember anything else right now; oh yea memory that’s getting worse and a numb face. I think I covered it for now.

     I am officially back to complaining and at this point that’s all I feel like doing. My body feels like it is tightening so bad that I think I shrunk an inch or two. I am at a point where I have no emotion at all, I want to cry but I can’t, the well is dry people. As Madonna once said “love don’t live here anymore”.

My Special Mom

     My mother had 4 children, her second born being the greatest…me. She raised us along with my father. We weren’t rich but she made sure we never wanted for anything. She did the best job raising all of us. I love my mother to death and am very close to her as are my sisters, brother, and my children. Grandma and grandkids all light up in the faces when they see each other. Till today she takes care of all of us making sure we are ok, even though the youngest is 22 and two of us don’t live there and have started our own families. I wouldn’t have it any other way.

     The tables are turning slightly; we are now the ones who have to take care of her. About 11 12 years ago she had a triple bypass and her carotid artery done. She also is a diabetic patient as well. Last year she was diagnosed with breast cancer and after three surgeries she ended up with a partial mastectomy. She hasn’t been looking good lately and we have asked her to go to the dr. She finally listened and is on the way for a catheterization tomorrow. The cardiologist said the thallium stress test showed the blood pumping slowly at the bottom of her heart. On top of this her sugar is out of control and she can’t into the endo till the end of the month. I’m not gonna lie, I am worried about tomorrow. The last cath she had resulted in a triple bypass. I just have bad feelings and I need to say it out loud.

     This is one of my major stresses right now and going through this is hurting me mentally and physically. I don’t show my emotion about things like this to spare my kids. Plus I have to be the stronger one right now because my sister is so upset by this. Someone has to be there for the one at home taking all the stress on. She does a lot in these situations. I feel bad; I don’t live there, have two kids of my own, and have my health issues. I try to help as best I can so if I need to a rock then I’ll be the hardest damn rock they need! That would be a diamond…ooohhhh lucky me! So onto the hospital in the morning and hopefully we will be bringing her home tomorrow night. Love, Kisses and Prayers to the best mom on earth.

My Story Continues

     Oh boy does it! So are we all ready for the ride?? Here we go. So I’m on the phone with my biffy Joanne (shout out girl) this morning and she asks me how things are going. Later in the day my girl Ariana (shout out 2) texts me and asks me how I’m feeling. I told them both not great and of course they asked why. I say to everyone now…I am not feeling too hot. My hands feel like they were hit repeatedly with a hammer as do my ankles. I have also as of today had a migraine for over 48 hrs now. My reason for feeling like shit…stress. Of course everyone wants to know what kind of stress, so I’ll run down the list I can remember.

     Here we go, buckle up buttercups. I have said in a previous blog that my 4 year old might have turrets syndrome, and the 2 year old has to have a lump on his wrist removed. I have called multiple neurologists and none of them take my insurance. I started looking for a pediatric surgeon and the only one my pediatrician gave me is “out of network” too. Ugggghhhh!!!!! I need to find doctors for my kids and my insurance has like 3 people. After I find a doctor on line I then need to research to make sure they are good enough to take care of my children, my reasons for fighting. Next we have my mother, she has had a triple bypass over ten years ago as well as her carotid artery cleaned and expanded on one side. On top of this she is a diabetic with uncontrolled diabetes as well as being a breast cancer patient. This Wednesday she is going into the hospital for another catheterization. Heard enough? I’m not done yet. My father has also been going for heart testing. We also have multiple family weddings coming up. My husband found long lost siblings (not so much a huge stress).  And then there’s me again. At the neurologist on Tuesday my blood pressure was 140/85…a bit high. My pressure has never gone higher than 110/70. On top of finding that out I have been experiencing pains in my chest on and off for a month now. Dr. Mustachulo see you in a week…wink wink.  Then I need to see the neuro ophthalmologist, dermatologist, new MRIs, a rheumatologist. The list just keeps on growing.

     So I said to Joanne this is why I don’t feel well again, I give up I’m done now. She proceeds to tell me I can’t because I have two kids to take care of. Yes thank you I know but I’m still done I told her. It’s just very frustrating to deal with everything at once. They say when it rains it pours…I feel like Noah and forgot to build my arc. I wish I could do something, anything to make the pain my family and I have been dealing with. I’d do almost anything, I won’t sell my soul to the devil, I hate the heat.