Anxiety is a bitch!

Last night I got into a fight with my bf and decided to down some vodka. A lot of things have been stressing me out lately and I tend to put my ms.stuff to the side to focus on normal life issues. I let things build up and then just breakdown and stay broken for a while. I had a bad anxiety attack and since last night keep having them. I was just saying that I havent needed to take xanax in awhile and now I'm almost out. Something triggers a panic attack and then they linger for a few weeks sometimes. It's times like this when I feel completely alone. I know that my fellow MS'ers can relate and that is why I like to blog.

My first MS support group went good and I an very excited about all the things I'm going to bring to the group. The only thing I need to do first is work on me but how I'm gonna do that I don't know......

Last night was a rough night for sleep. My right hand has been hurting and getting to the point it's hard to turn knobs or open things. I couldn't sleep because of the pain and nerves. I had an appt today for some assistance but I was denied so that was stressing me out yesterday. There are things daily wrong with me but somedays are easier to deal with than others. Today is another blah sort of day, I don't really have much more to say... Life can suck it

Pain pain go away come again never!

I have been having more pain than normal and also hands and feet are numbing up a lot. I have started trying to exercise again but my legs itch and burn so bad and I can't even walk after cause they are completely numb. I'm really trying to cope with this the best I can but it is so discouraging at times. Along with all of the normal life stressors like money, job, health insurance I have this constant burden. It tends to be a bit much and I'm pretty over it. I often wonder what it would be like of I still didn't know I had MS. I would have nothing to blame everything on but I would still be trying to figure out what the hell was going on with me. All things happen for a reason but I want to know what the reason for this is.

On a brighter note this Saturday is my second MS Support group meeting, first as the new "leader." I am very excited to be taking on thus new role and have so much I want to do with the five member group. I was looking for a group to attend then found one and it just so happened the current leader is ready to retire. I stepped up willing and ready to take over. I am just waiting on the NMSS to get my paperwork and then I need to do some training. I can be glad that MS is giving me the ability to reach out to people and share my story!

Pain and cold sensitivities

Went to see my pcp today for an osteopathic treatment which I love. It does help with my pain and she tells me which areas really needing stretching and massaging. My boyfriend helps with massaging part :-) She said she wants me to try Accupuncture and continue physical therapy to see if it helps the pain and if it doesn't I can stop. I am still unsure if I want to continue everything .

I also realized I am sensitive to cold as well as heat, fml! It gets better and better as the days go on. It's summer but the past couple of days have been cooler and I have been freezing.My boyfriend loves that I am so hot and cold literally.  

Nothing else is new, just talk about starting treatment, possibly Tysabri but still just talk. Good Night!

NMSS

I mentioned before how sensitive to heat I am and I have been in desperate need of some cool air conditioning. My fans are not helping my little apartment gets way too hot especially when I cook. I applied for financial assistance through the National Multiple Sclerosis Society, got approved for a window air condition and should receive it this weekend. I am so very greatful to have these sort of services available to me. There is no way I would have been able to afford one otherwise. The link to find out more about the services offered by my local chapter is down below. My goal is to make people of aware of these services and also help raise money to keep them going!

http://www.nationalmssociety.org/chapters/can/programs--services/client-services/financial-assistance/index.aspx

Another day as an MS'er

Today another one of those amazing MS things that I love happened. I needed to go grocery shopping and decided after church would be a good time. I didn't think about how busy it would be and what the weather would be like at the time but soon after I got to the store I realized how not smart it was. I had a pretty big list of food and should have taken some reinforcements with me but I was flying solo. I always make a list and I even put things in order of where they are in the store. My store even has an app so I know which things I am going to buy are on sale. I had to make a quick stop before the grocery store and at that point I wanted to just go back home. It was hot and everyone and their mothers was out shopping. We really needed food so I just rolled with my plan. 


I started out okay going down only the aisles I needed to but about 15-20 minutes into it I started having extreme brain fog and started cruising around different aisles aimlessly looking for things when I knew exactly what I needed. I don't know exactly how long I was in the store but it felt like forever and my boyfriend said I was gone a really long time. When I was ready to checkout I was so weak from pushing around all of these groceries I could hardly put stuff on the conveyor belt. I got up to the cashier and was completely out of it but managed to write out my check and pay her after asking some really stupid questions and forgetting to give her my coupons and reusable bags. Good thing I was not using my debit card because that is always a disaster. 


There were some things that were rung up wrong on my receipt and I could not for the life of me get the girl at customer service to figure it out so I just took the loss and asked her to get me some help out. Here I am a young healthy looking woman having an even younger lady push my cart to my car and load my groceries for me. I made sure to put my sunglasses on because I knew the tears were coming. They started on the way to the car because I felt like absolute shit. I got in my car turned it on rolled down the windows and blasted the ac. I wanted to call for help because I did not think I could manage driving home but my phone was dead so I just sat and cried. My pity party lasted for about 10 minutes and then I decided to go home. I made it very slowly and probably not driving too safe but I got home. I asked my boyfriend to unload the groceries and told him it was a horrible trip and I am never doing it alone again! After resting for a bit I made dinner and did some dishes. I love to cook and made a vow to myself to not let MS keep me from cooking daily. Regardless of how I feel I am not going to let MS take away something that makes me happy and feel good. So far it has gone well but there have been many times I have wanted to throw in the towel. 


I just finished reading a book called "No More Secs! by Ann Pietrangelo. Really good and authentic account of someone living with Ms. I actually got the cooking dinner idea from her and a few other things like this blog. It really does help being able to read about other people's battles with MS and learn from them. We all have our own demon's to fight but in the bigger picture of things they are the same!

Estefana

Weight Watchers

This morning I woke up and decided to go to a Weight Watchers meeting because I am completely disgusted with  my weight. Weight watchers is the only way I know how to lose weight and keep it off and since I have been totally off have gained about 13 pounds. I pretty much felt off when I got my final diagnosis although I have always struggled with my weight. I am determined to get back on track and get into my groove again. I'm starting fresh and taking baby steps, I have a clean slate as of today.  My meeting leader told me not to beat myself up and focus on where I started from and not where I was a couple of months ago. That is my plan and where I started from was not a pretty sight. I have a headache this morning which feels like it will turn into a migraine, fingers crossed and hoping for a good day otherwise. I get headaches often and they are not related to MS per my Neurologist. I beg to differ but who am I anyways????

Pain is an everyday thing

My plan was to blog daily but yesterday I was in a lot of pain and didn't feel like sitting at the computer after working all day. I have a lot of back and left sciatic leg pain and sometimes I cannot even walk. I work full-time as a medical assistant so I am sitting and walking all day long. It just makes my pain worse. I have been referred to get acupuncture and physical therapy and so far nothing has helped. 

I have asked my Dr for so many referrals she must think I am a nut job. I could not agree with her more! I just can't figure out what I should worry about and what I should just deal with. I went to a Urologist for urinary incontinence and he said it was not related to MS but possibly a medication I was on. I since stopped the medication and it got better. 

I just saw a Gastroenterologist for constipation that has been going on for over a year and she thinks it is related to MS. I talked to my Neurologist about it and he said there are no treatments for constipation besides what the general public gets. The GI told me to get glycerin suppositories, take stool softeners, magnesium, fiber, get more exercise and drink plenty of fluids including caffeine. I felt like such an old person buying all these things to help me go to the bathroom. Good thing I did not see anybody I knew at the pharmacy. 

I have also been referred to a sleep specialist but have yet to go see him because I have a feeling he will not be able to do anything. My sleep has gotten better but sometimes I just can't sleep for poop and it is really frustrating. One night I remember sleeping less than an hour and crying myself to sleep. When my depression and anxiety were really bad my sleep was worse. 

I really feel like I have gotten all of the things old people get at one time and I don't like it one bit. I am very thankful I still have most of my brain and wit, lets see how long that will last though. 

Heat is the devil

Yesterday was the 4th of July and I am very happy to say that it was not 80 degrees. Hot weather makes me an unhappy camper, anything over 70 is no bueno for me. This MS has driven me and the heat to be mortal enemies. Heat makes my cranky, exhausted, and nauseous. I pretty much do not want to do anything when it is too hot except sit around my apartment with my fan blasted right on me. 


For awhile I thought I was just a complainer because I was always too hot when no one else was. My boyfriend even called me a weirdo because of it, come to find out it was MS this whole time. I used to go to Mexico and Texas during the summer and never complained about the heat or felt the way I do now. 


It is really unfortunate for me because I live in paradise a.k.a. Santa Cruz, California. The weather is mostly warm but we always have a cool ocean breeze. I live about 2 blocks from the beach and frequent there often except when it is too warm. The last time I was out in the sun for a couple of hours on an evening for my sisters graduation I almost died. Okay not literally died but the whole weekend after that I felt like pure crap. Not to mention I had to leave my sisters graduation dinner without eating because I thought I was going to faint. 


I know this is something that a lot of MS'ers can relate too. I just recently got a cooling vest from MSAA which I wear at work under my scrubs because my working space is like a sauna. It helps but the ice packs go warm after a few hours, maybe I am just to hot to handle!

Here is the MSAA cooling program page, print out application and mail in takes about a week to get your vest.

Another blog done!
Estefana

First and Foremost

This first post is a long one so only read it if you have nothing else to do today!


My journey leading up to the diagnosis of MS began in 2007.This is now my life and there is nothing I can do to change it. Coming to terms with something of this nature is not an easy thing and does not happen on one single day. It has surpassed any struggle I have dealt with thus far and continues to pull at me daily. I am coping the best that I can and want to share my story to hopefully network with other people in my situation.


Looking back at my medical records, we think my first episode was in late 2007. I had went to my Dr which I rarely did since I was fairly healthy but I was not feeling well. My arms, legs and face were numb and tingly  and went on for a couple of weeks. This numbness and such could not be explained and was thought to be some muscle issue and probably caused by my obesity. We just kind of swept it under the rug and I did nothing about my weight for an extremely long time. I thought it was weird but did not dig around for answers. I also had back issues, headaches, and depression which I went in to see the Dr for but there was never anything serious. We had no idea or other inclinations that something may be stirring inside my brain and spinal cord. 


Then in 2010 I decided I was fed up with being a fat girl and joined Weight Watchers again for the gazillionth time. I didn't feel unhealthy because of my weight and I was always overweight even since early childhood. I did not love the way I looked but was comfortable with it but literally one day woke up and said I want to lose weight. I actually put my all into losing weight and it started coming off with their point system and regular exercise. I started looking great and felt okay but not as well as I had expected with weight loss. I started wondering why I felt sick and was tired a lot and just figured it was because my life was so stressful and crazy. My depression got worse and I became very anxious and started having panic attacks for the simplest things, I was like a grenade just waiting for explosion. I could not understand why I felt so crazy if I was happy for the most part and don't feel like my stress level was any higher than the normal person. Little did I know these were symptoms of MS.


In 2011 I went to my Dr again for an odd reason, I was feeling dizzy and had serious vertigo. Again we ended up just tossing it to the sidelines. What the hell??? What non-pregnant person gets vertigo and dizziness for no apparent reason. I became a frequent flyer at my Dr's office and went in for everything that came up. I made a fond relationship with this woman who was treating me for god knows what i.e. low blood pressure, low blood sugar, stress, depression, anxiety,insomnia, the list could continue forever. She eventually decided she had no idea what was going on with me and called me a mystery woman. I decided to diagnose myself with Hypochondriacism and thought I called it a day. Unbeknownst to me it was not a day but a beginning to the rest of my life. 

In February 2012 I woke up on Superbowl Sunday went to workout at the gym with my boyfriend. I had a little bit of a headache but thought it was because I hadn't eaten breakfast. I went and had coffee with a new friend and noticed my headache getting worse and worse. By the time I got back from the meeting I felt horrible, took some migraine medicine and tried to get on with my day. I ate a bunch of crap that day and still felt horrible I even ended up vomiting which I never do. I thought I just had a really bad migraine and tried to rest it off. The next day I woke up and still had the headache but just thought maybe it would take a little longer to go away. After about a week I went to my Dr and she said it was probably just a migraine that needed a little longer, she prescribed migraine medicine, rest, fluids and plenty of sleep. Sleep was a very funny thing which I knew nothing about but I sure did try. After nothing helping and having a constant headache for 3 weeks my Dr ordered an MRI to see if there was anything causing the pain. I went in on the 22nd of February to have the MRI. That was a lot of fun on top of my headache hearing weird really loud noises for an hour and being given a shot of contrast. A couple of days later got a call from my Dr saying I needed to come in to go over results and I started flipping out. I thought I had cancer or a hemmorhage or something but definitely not MS. 


My MRI showed lesions which her suggestive of Ms. When I read Multiple Sclerosis on my report I freaked out because my paternal grandmother had MS. She died in her 60's but was diagnosed late in life and died from other causes. My Dr said she could not say 100% that I had or did not have MS, she did not think I had any of the classic symptoms and thought my headache had nothing to do with the MS. She referred me to a Neurologist which I had seen in the past for headaches. I saw him  on February 28th and he was positive it was MS. He said I had many lesions and they looked like MS. He decided we should do a spinal tap to be sure and that was scheduled for a month later.


March 28th I had the spinal tap which was the best experience of my entire life. I hate needles and being poked and I am a total baby when it comes to pain. My neurologist had a hard time tapping my spinal cord and poked me about 10 times. He finally got it but I was in so much damn pain afterwards it was unbearable. I stayed home that day in bed and was waited on by my family. I am the baby of 3 kids, both my parents live here and my older sister. I have a brother that lives about 8 hours from us. The next day I got up to go to work and proceeded like usual. While I was in the shower I started to get a headache that was not like any other I had. Oh shit is this the spinal headache that they were talking about, just lovely! I had been headache free for a few weeks so this is not what I wanted. I went to work but after being up out of bed for about an hour I could not stand the pain and had to go back home. I called my neurologist and told him about the headache and he recommended just going back to bed and stay there for the day. He said if by the next morning I was not better he wanted me to get a blood patch. I stayed in bed and prayed that I would not have to have a blood patch and be poked yet another time. 


Long behold the next morning I woke up got out of bed and immediately laid back down. The headache was excruciating and debilitating. Nothing like I have ever felt in my whole life and mind you I have 2 children which I had vaginally with meds of course but still felt pain. I called my neurologist and he told me to head to the hospital to register and one of the anesthesiologist was going to do my blood patch. The anesthesiologist was very handsome and sweet and explained the whole process and everything he was going to do. He took blood from my vein and injected it into my spinal cord so that my fluid would stop leaking up into my head and causing me pain. He also had a hard time getting into my spine he said my back muscle was very tough and hard to get through. He got it though and as soon as I sat up I felt like a brand new woman.


A few days after the spinal tap I called my neurologist to get results and he told me conclusively that it was MS. He talked for awhile about treatment and who knows what because I was dumbfounded. I had an inclination but did not think I actually had it. That evening I went home and totally blew my new way of eating and have been struggling ever since, that was 3 months ago. I am and always have been an emotional eater and my emotions have been getting the best of me. I told all of my friends and family members, well everyone that I had not previously told. I started researching and even went to Stanford school of medicine for a second opinion. I got the same opinion from them and also got offered medication. Woo hoo I shot everyday because I love shots so much, no way!!!!


I could talk about how this all came about forever but there is no point. The point is that I now have this disease (title) which I can never get rid of so I have to use it to my advantage and help as many other people with the same bearings as possible. I plan on writing on my new blog and reaching out to the MS community through our support group and the NMSS. I will embrace any feedback you have and hope that I did not lose anyone in my mumble jumble!


Estefana 
New MS'er/Blogger