My Story: My Sense of humor

My Story: My Sense of humor: So okay, I had a rough and I mean rough summer health wise. I know blah blah blah, yadda yadda yadda. Well I stated this p...

My Sense of humor

                  So okay, I had a rough and I mean rough summer health wise. I know blah blah blah, yadda yadda yadda. Well I stated this past week to friends and family that I could honestly say I’ve been feeling the best I have been in two years. Well I’ll learn never to say that again! I have come to the conclusion that God and Karma are in cahoots against me. They must know that my family thinks it’s hysterical to see me mad and have now joined in on this little game. No sooner did I say I was feeling good, the next day I was walking with the piump cane in pain from the groin and going numb the more I walked around. Really!!!???!!!  So it lasted a few days and I’m over it.

                Not only have I had a hellish year health wise, I have also had a whole bunch of other “life” issues to deal with. Some of which I am still dealing; one in particular being financial issues. I decided to cut down where I could and surprisingly leasing a new car was one way. My monthly payments went down, my insurance went down, and the new car is a lot better on gas. So I got my new toy Thursday. Is everyone ready for the punch line? Oh yea, this must be a joke cause I have no other explanation. I had a car accident today, in my 3 day old car! Insert laughter here. Everyone in the car is alright thank God, and the kids weren’t in the car at the time either.

                This is why I don’t like saying things are doing well or I am feeling good. God and Karma have a sick sense of humor. Now I sit here with my neck and back hurting, a head ache and knee pain. WTF guys?!? What’s the deal? I am not very amused by this and now my poor car has to suffer. There was one casualty, my little Leo. He was knock right off the dashboard where he has sat in every car I have owned. I picked him up and quickly apologized. Yes people I apologized to a stuffed leopard, deal with it.

My Story: Many different Symptoms

My Story: Many different Symptoms: Yearly MRI’s stable no progression, MS meds finally covered, blood pressure is going down. Anthony started pre-k and likes it. So it...

Many different Symptoms

        Yearly MRI’s stable no progression, MS meds finally covered, blood pressure is going down. Anthony started pre-k and likes it. So it sounds like things are starting to look up and move forward.  WRONG! For the three steps I just took forward I am in the middle of ten steps backward. So frustrating. While I am thrilled my MRI’s came back great, I am still not feeling 100%. I am walking without my cane and dare I say even a little speed to my stride, but my right leg has been giving out on me AGAIN. Oh well. My hands have a permanent neuropathy in them and it’s just an odd feeling all the time. I am starting with the fatigue as well. Compared to the beginning of the summer though my symptoms have greatly improved.

        I’m sure you are all wondering why I am still having issues…MAJOR STRESS.  It is all true, heat and stress can worsen symptoms. A lot of these problems are mainly caused by inflammation and I discovered a new issue worsened by it. A lovely friend I call my lap band. Apparently even though there is no band slippage or perforation I have a weakened esophagus due to my MS and it makes it difficult to eat.  Let’s add a flare up and it feels like there is a knife stabbing my chest. So after seeing some doctors the decision has been made that it is coming out. Now to get the insurance to approve it. Let’s all keep our fingers crossed. I’m not gonna lie kiddies, I love broccoli and miss not being able to eat it. I know this isn’t one of my best stories but I have major writers block lately and had the need to write. I am attributing it to all the meds I’m taking. I also attribute the non emotions I feel lately to the meds as well as other things. I apologize for the lack of enthusiasm in this installment but as my cousin always says “DEAL WIT IT”!

My Sad reality check

            Warning: the following content might make you depressed (I know it depressed me).

So I have noticed that compared to a few months ago I am walking 87 times better than I was. Such a positive note to start on I know. That’s the end of it, here comes the Debbie Downer moment. My whole upper body is slowly getting worse day by day. Every muscle and bone is on fire in my arms, legs and hands. My hands are so weak and shaky that to even type this is taking 3 times longer. It is hard for me to guide my fingers to where they need to be. Grabbing smaller objects like pens and utensils are harder than grabbing cups and larger objects. The downside to being able to grab the larger stuff easier is being able to keep it in my hands.  My vision is getting blurry as well and I feel a bit disoriented at times. A lot to deal with and I never asked for it.

                I met a woman at work yesterday who came in to visit her father. She came in a motorized wheelchair, I could tell just by looking at her that she was in it due to the same shitty disease. We started talking and she confirmed that she did in fact suffer from MS. I got so sick to my stomach at that moment. This very nice woman was older; I would guess around fifties and was diagnosed years ago. I get so depressed on a daily basis just dealing with it now but seeing people like that reminding me this is my life, my sad reality; and I have another 40 plus years to live with this makes my head spin.  As I sit here typing this, my head is literally spinning. I am so dizzy it is making me nauseous. Every little eye and head movement is dangerous. I still have to trek it to work tonight and take care of my kids right now. Even though this is all going on around me I still look good! J

I love My Sons!

I have said it quite often; my kids give me the strength to want to fight Multiple Sclerosis. Well today my sons wore momma out. I have to say that the past couple of weeks I have been feeling half way decent; despite all my stress right now. I worked the last two nights and they were oddly busy nights for me. I woke up this morning vacuumed my house, washed floors, and did dishes. After all of this I am pooped, but silly me started using my brain and decided to take the boys to the park. Apparently I had this thought out loud so Anthony heard it and we all know once a four year old hears park it better happen or else.

                So after Danny woke up from his nap off we walked the five blocks to the park; skates in tow. Once we finally got there I put the boy’s skates on and off the attempted to go. It was Danny’s first time on roller skates and Anthony’s second so I had one on each arm. It was so cute to see them both try though. They truly make me happy no matter how I feel. The little one wanted to hold on to his big brother’s hand instead of mine. They both spent more time on their butts than upright. Priceless!

                Now why would someone in my condition go out in almost 90 degree heat with two little kids to the park alone and put them in skates? I have no logical answer for you; I blame it on the MS. My mind is not where it should be. Then as we all sat there sweaty, hot, and tired mommy realized we had to walk the five blocks home. Oh and I forgot to mention the last three blocks are uphill. On the way home my older son is complaining about having to walk and wants to go get the car…at home…which we had to walk to. Anyone getting this? Yeah he wasn’t. We made it though and now my back and legs are killing me. Pain well worth it for my sons though! <3

MS tidbit

               Ok so the way I describe MS to people is that my immune system is attacking my central nervous system. Essentially it sees my SNS as a virus and is working so hard to get rid of the virus it is eating away at the myelin covering my nerves exposing them which is why everything goes crazy numb and why I always have some sort of pain. The one good thing about this whole disease is because my immune system is working so hard I guess; I tend to heal unusually fast and very rarely get sick. Don’t get me wrong MS still sucks big time. Surprise, I’m sick!

                I have a head cold and I’m not happy about it. For me to get to a point where I am in bed and on antibiotics it’s bad. Even though I am ALWAYS complaining about how crappy I feel, when I get sick like this it’s even worse. I hate when my throat hurts more than anything. Let’s add the fact that my ears are clogged and my hearing is now even worse because of it. I am one big baby. I am so uncomfortable it’s not even funny. I went through a box of tissues in 3 hours.  And there is nothing on TV. Being sick in the summer sucks…waaaaaaaaaaaa! Any chicken soup will be very much appreciated thank you.

More Stress!!

                I don’t write to complain (well maybe a little), I write to inform. There are so many people who have so many questions about Multiple Sclerosis; I am definitely one of them. I am also one of the thousands of people living with Multiple Sclerosis. I decided to document my struggles and obstacles I face and try to overcome with this disease and believe me there are many. I have only been “officially” living with MS for just under two years. What a long two years it’s been. I have not had more than a day or two of relief here and there and as I write it is not getting any better. I have been writing about all of my aches, pains, and tingles as well as all the stress and issues that lead me to said aches, pains, and tingles.

                One of the biggest issues I have been having lately is trying to get my medication covered somehow; three months later and still no luck. As I said I still have tons of questions about MS and as I have come to find out so do the doctors I speak to. I have been without my MS medication for three days now and tonight it is starting to hit me. I had to leave work due to a useless right arm, facial numbness and right leg numbness. Unfortunately it always seems to be the right side of my body and I happen to be a righty. Some doctors say that not taking meds for a short time won’t affect you that quickly…wrong! I want to meet a neurologist who is living with MS as well because I am sure they will know exactly what I mean. MS is so annoyingly and predictably unpredictable.

                The pain and weakness that is taking over my body again is really getting annoying. I have to deal with this for the rest of my life and I’m only 32. Hello major depression. Everyone says to be strong; I have kids to take care of. Screw you I am tired of being strong. I am tired of looking good to cover up the pain. I am tired of not sleeping at night because of MAJOR stress about my life right now. The truth, the truth is I am screwed! I stay awake every night wondering how I am going to pay bills and feed my kids because I can’t work the way I need to. I am tired of being sick and tired. I don’t want to hear how strong I am or need to be or how God only gives us what we can handle. This tough love crap does not nor has it ever worked on me. I am not strong and God I cannot handle everything you have given me lately. I am ready to turn my back. I am about to give in and make a deal with the devil. I am pretty sure the drug and insurance companies have because this whole process is hell lately.

                My face says it all; no matter how much makeup I put on. I walked into work pale, dazed, and very slowly. Everyone who looked at me could automatically tell how I was feeling. I left work early and a fifteen minute drive took me almost forty-five. As I was driving I had moments of confusion where I would zone out. I am thankful I didn’t get into an accident. I was not under the influence of any drugs or alcohol and I felt like I was. I still feel like I am. This is not good. The only thing to do is go to bed and get up every morning, make breakfast for the boys and continue on with my life like I have been for the last 32 years. Time to say see ya for now cause my fingers and wrists are on fire.

My life Sucks!!!!!!!!!!

                 My life totally keeps getting worse. I dread waking up lately. It sucks! We all know the shopping list of issues going on in my life. Financial, marriage, my mother’s health, my kid’s health, my health, work. I will not go into any further detail with the list. The one thing I am revisiting is my meds; or lack thereof. It has been three months now and I still cannot find a way to get them covered. Husbands insurance stopped covering and my insurance is nonexistent. I applied for the patient assistance program through the drug company that makes the meds. They were able to send me a month of medication as an emergency and I also was able to get a month’s worth from my doctor’s office. Well here I am today with no more because the drug company has been dancing around with me on the application process and now I find out today that it was rejected due to lack of information that they actually had. Here we go again from the beginning. I have to fill out a new application and send them everything again! I am not a happy camper right now.

                Why is it so easy for crack heads to get Medicare, food stamp, section eight; etc? They are apparently more important to take care of then people with crippling diseases. Yea right these are the ones I want to save, the wastes of life that don’t want to get off their asses and do anything with themselves. Its things like this that make me the extremely bitter person I am today. I have two kids and a husband who works. I have a job of my own. I wake up every day and do all the normal daily housewife things that millions of us do all the time. The difference is it takes a little more from me to do it. Then we have all of these “fabulous” people walking around high on legal and illegal drugs and we are paying for it. I am robbing a bank tomorrow so I can pay for my medication to keep the feeling in my legs enough so I can stay upright.

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.

Major Stumble

     So I am now convinced that I have the knack for jinxing myself. Last time I posted that I was feeling more energy and starting to feel better. Boy was that a mistake! I woke up Monday morning feeling like a Mac truck ran me over. The fatigue and back pain, hip pain, and arm pain have all returned. I’m hoping it will subside within the next week though. I am no longer going to vocalize when I am doing well. Apparently this blog is meant to be a “Debbie Downer” post all the time.

     Speaking of down, I almost went flat on my face this afternoon.  I was walking out of my front door and my legs forgot they were supporting me again, typical. I started falling down the concrete steps leading up to my door. My angel was definitely there though. Somehow as I was watching myself in the future falling and breaking all the bones in my face I managed to not do it. I went down the steps without falling but my legs were no help, just the left arm which is what I used to grab the banister to prevent the face break. Thank you grandpa for carrying me down the stairs. In turn, my pinky and ring finger, and wrist on my left hand are killing me along with my entire back and left hip. I sound like a 90 year old man I know. I feel like one too.

     This is always my biggest fear, falling down the stairs. I thank God I wasn’t holding one of my kids, that’s the only thing that scares me more than falling is falling with one of them in my arms. I have been overcome by this fear lately and it is one reason I don’t like to leave my house alone anymore. To literally have a full blown anxiety attack at the top of the staircase as I stare down and make my plan is sickening. Unfortunately this is my life. I was never a person to fear much but lately because of the MS I fear a lot lately. I can’t even begin to explain the feeling I get walking down stairs. I know you think it’s crazy but if you have n=been paying attention you will realize it’s not all that crazy. The thought of holding my son, a pocketbook, watching to make sure my other son doesn’t fall and making my game plan to go down literally makes me nauseous. So when I started falling down the steps you can only imagine the fear I felt. My heart was beating out of my chest.  I only hope my children never know this feeling. Day by day people, day by day.

My Stress

     STRESS!!!!!!!!!!!! It is everywhere we turn. These days waking up is stressful for me. Ask any neurologist or MS patient and they will tell how easily stress aggravates our condition. I love when I am told by a medical professional to keep my stress level down. Like I said before, easier said than done people. I have two very active little boys and a husband to care for, a 3 bedroom apartment to keep clean and three meals a day to cook plus snacks. Let's not forget the food shopping and work three nights a week till 11pm. I know I am not the only person on earth doing it but we all know everyday life which is what I live is stressful so how am I gonna keep my stress level down. Now lets add the extreme fatigue, numb limbs, weak legs and the constant back pain I have...more stress. Ok you still with me? Besides the constant financial struggle that many of us are facing I now have another worry on my plate, not being able to afford my meds.
     Oh yes I said it. My ins. co. is no longer covering my meds. Apparently only diabetics and asthmatics are guaranteed meds by the state, but if you have a debilitating disease you are screwed. What does one do when they here that the copay for their medication is over$2,00.00? Well I don't know about you but I had a mini nervous breakdown! I also called all the numbers on the back of my insurance cards and got a big fat NOTHING! I am now at the mercy of the drug company hoping I can qualify for their assistance program.I'm not gonna lie, I do not have a hopeful outlook about it. For 2 years this is just the way my luck has been so I now automatically think that way so when it does go right I am surprised...it gives me something to look forward to. Like Christmas morning.
     I know normal everyday life is stressful for everyone and we all have our own problems on top of it, so it's not as simple as the Dr.s think it is to keep it at a low level. The difference between you and me...when I get stressed out my hands go numb and my legs stop supporting me but it's ok cause I have other support from family and friends. Insert tear. Enough about me though...well for now LOL.

MS...My Story

     Ok, I'm VERY new to this whole blogging thing so please bare with me. A friend recently told me I should do this. She is always commenting, laughing, supporting and agreeing with my Face book posts about my daily struggles along with a whole bunch of the most supportive group of family and friends ever. What is it that I write about that is sooooo special? Nothing really I see it more as complaining. You see I have MS, Multiple Sclerosis along with thousands of other people in this world. What makes me different? Absolutely nothing!
     So here is my story. I had my second child in July of 2009 and shortly after his birth i began to have widespread numbness on the right side of my body. By early October my legs were giving out on me and I started falling and even got hurt at work because of this. I started to see a neurologist and she immediately started with a battery of tests including 3 MRIs, an EEG, an Evoked Potential and plenty of blood work. The result...Multiple Sclerosis. Great! I now have a 2 1/2 year old and a 3 month old. Oh and I'm only 30 at this point.Since my diagnosis I have had little relief and am BEYOND frustrated with this shitty disease.
     On to the cliche phrases you hear from everyone..."MS doesn't have you, you have MS.", "God only gives you what you can handle.", "it'll get better just keep faith.", and my personal fave "But you look good!". Really??!! The symptoms of MS are "invisible" so I never look as bad as I feel. I mean, I know I looooook gooooood...LOL. Please if I can give advice to people who live outside the disease, DON"T TELL US HOW GOOD WE LOOK. Thank you. It is very frustrating to hear it ALL the time. We appreciate that you are trying to be nice and sympathetic, but at the same time it makes us feel like you don't believe us when we say how we are truly feeling. Now I say we and us but I am by no means speaking for everyone living with MS, just myself really. I am not looking for sympathy from people when I post comments on FB about my aches and pains and lack of feeling in my limbs, just an outlet to complain from time to time. I try to keep a positive outlook on things and I do poke fun at myself and the MS along with my sisters and friends. If I can laugh at myself, I'd be pretty pissed at everyone else who is making fun of me.
     I can go on and on, and I will from time to time. As of today I am home from work on disability again. My hands are tingly and numb and the widespread whole body pain that left for a month is slowly returning, believe me I didn't miss it. Oh lets not forget the excessive fatigue, mood swings, muscle tightness, blurred vision and occasional loss of right arm use. I loved being a 31year old having to hold my blinged out cane in one hand and baby in the other...what a sight. Luckily I don't need my cane right now, theirs my silver lining! I live and fight because I have the 2 most beautiful, loving, funny, and wild boys on earth. I can honestly say if I didn't have my guys I don't think I'd be fighting this hard, buuuuuuut it's stressful at times.
     I am told by my Dr.s and nurses to keep my stress level down cause that aggravates the MS. Just walking out the door these days causes stress...easier said than done people. I complain because it releases some of my stress so let me bitch and moan when I need to please.

     Ok I know this is all over the place but it's my very first time, I promise it will get more organized little by little. This is all for today cause my hands are numb now.