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Monday, September 30, 2013

Saturday, September 28, 2013

Invisible illness...

The invisible illness... an illness in which one person has that another person cannot see. Meaning, you are sick but you don't look it. So with that, it is really frustrating. With the strange, weird, dirty looks that you receive when getting out of the car in a handicap spot. To riding an electric scooter in a grocery store. People giving you the same dirty look. Rude and impolite for not getting out of the way. All they see is a younger, over weight "lazy" woman.
Friends and family seem not to understand either. Not all, some. Hearing comments "just go for a walk" or "if you would get out of the house, you would feel better". It's not that simple. I cannot "just go for a walk". It is too exhausting. I have to actually tell and remind my legs to walk that feel like they are weighted down after 25 feet. I cannot "get out of the house" to make me feel better. Some times, a group of people talking is so irritating. Makes my skin crawl, my muscles ache. Conversation is exhausting. The concentration and understanding what is being said is taxing. There are some days that I just can't do it. And choose not to. Some days, it's not worth the trouble.
You have to understand that everything, I mean EVERYTHING, that I do in a day takes planning. I cannot simply get up in the morning, jump in the shower and start laundry. I wake up, take medication, lay back down. Not shower until bedtime because it is exhausting. It will take all day to wash clothes. Throw a load in the washer. Rest. Put in dryer, throw another load in the washer, rest. Fold clothes. Rest. It can be taxing just planning the steps so I don't get exhausted. Some days, I just give in and do nothing but rest.
I just wish people could see the actual struggle inside. That it is taking all their might to make it through the grocery store. It is taking all their might to walk without falling. Hoping and praying to make it through your kid's softball game. I am NOT lazy! I am NOT trying to get a free ride and not work. I am doing the best I can!

Tuesday, September 24, 2013

Sunday, September 22, 2013

Pain Pain GO AWAY! Seriously, get outta here!!

Bad pain day. Back, feet, arms and shoulders. Chronic pain...is well, a pain! I don't know if it is the weather change, just a bad day or a flare. I could hardly lift a skillet this evening for dinner. My left arm has had so much pain in weakness recently. It is strange. I even placed a Lidoderm patch on my arm. Didn't really make that much of a difference. Being in pain all the time really wears you down mentally. If you are up too long, your pain increases. If you are laying too much, the pain increases. Can't sit in a chair or ride in a car too long either. Because why you ask?  You guessed it! The pain increases!  LOL It is rather annoying. Always switching positions. Stretching and laying still at times. Strategizing ways not to increase your pain. But then you have fatigue factor you have to add in to the mix. It's tiresome! Like I said....chronic pain is a pain!!

Thursday, September 19, 2013

Darn you Discoid Lupus!! Darn you!!

About a month ago my Discoid Lupus flared up...


Doesn't really itch, just hurts. Kinda like a sunburn. Very irritated, raw feeling at times. Had a round of steroids and it cleared up nicely.

So now, a month later, it's attacking the front of my neck!


Looks horrible! Looks like terrible hickeys lol Trust me, they are not lol. Guess I'm calling the doc again tomorrow. I will say that I would rather have them on my neck and arms than on my face! Lovely Discoid Lupus!!

Wednesday, September 18, 2013

Great website for people who have MS

I found a really great website for people who have Mulitple Sclerosis. Nice community forum and you can create your own little blog. It is wonderful to talk to people about what you are going through. Makes you feel like you are not crazy!

My MS Team

Check it out!!


Tuesday, September 17, 2013

Missing my father and feeling his presence...

I lost my father in January of this year. The greatest man I have ever known. I miss him terribly. I find myself picking up the phone from time to time to give him a call. Or seeing a movie on TV that he would love, I'd want to call him. He had been sick for many, many years. I watched this invincible man become so dependent on my mom. He too went through years of physicians telling him that he wasn't sick, he needed to change jobs, needed to reduce stress and need to see a psychologist. He understood what it is like to lose abilities that he once had. He understood that, at times, it just sucked depending on others. I think the year of his life, him and I gotten closer.
These past few months I have been in dispute with a neighbor. I know that if my dad was here, he would have taken care of it. He would have been here so fast and telling the neighbors how to fix the problem.
I have a sense of my dad's presence. I have a sense that he is over my shoulder. I feel like he is telling me how to handle the situation. It is just a strong, unexplainable, overwhelming feeling. I talked with my mom about this. She said it was my dad giving me strength in his spirit. I didn't think of it that way. I truly believe it!
Miss you and love you Dad!!


Sunday, September 15, 2013

Increased anxiety and problems with decision making...

So today I had terrible anxiety and I noticed that I had a very difficult time making decisions. Long story short: neighbor, broken water line, flooding my yard and them digging holes in my yard without permission. UGH!

I noticed the following:
  1. Anxiety: my anxiety was so high I had tremors more than usual. My chest had pressure. My mind was racing. My face was red because my nerves were so bad.
  2. Decision Making: I could not make a decision. My hubby was at work and it was left to me. I looked at my other neighbor/wonderful friend for guidance on what to do about the situation but I could not decide for myself. I felt that I could not tell the idiot neighbor "No, you are not digging in my yard". That is not me. Before I got sick, I wouldn't hesitate to tell someone what I thought. This time, I needed my husband to make choices. This is what really bothers me because I was always this strong, opinionated woman who knew what to do all the time. I could think clearly and decide. Now, I can't decide. Ticks me off!
  3. Anger: I was so angry, I didn't' know what to do. I think this was heightened because of impaired decision making. It just frustrated me even more. I don't like confrontation. 
  4. Increased pain: Of course my pain increased. Especially in my hips and legs. From all the anger, anxiety and being ticked off because I couldn't make decisions my pain was increased. Bring on the ibuprofen!
  5. Mentally exhausted: I have difficulty thinking on a good day. This completely mentally exhausted me.
So what did I do to calm down... take ibuprofen, talked with my hubby, best friend and my wonderful neighbor next door. Took a deep breath, had a drink with the wonderful neighbor and thought....It is what it is and I can't change it. The yard will eventually be taken care of. I need to stop worrying about things I cannot change. It is only making me feel worse. I have to come to grips that I do have trouble making decisions and that is what I have hubby and good friends for. Love and support. More importantly...

You can't fix stupid! 

Thursday, September 12, 2013

I'm tired of being in pain!

I am so tired of being in pain everyday! It is getting really old! If it's not my back, it's my neck. If it's not my neck, it's my legs. If it's not my...you get the picture lol. Everyday flippen day! It makes me depressed, angry and irritable. In return, these feelings make the pain worse. Vicious cycle. In July, I was on high dose IV steroids. I was actually pain free. Sadly, it was the strangest feeling to be pain free. I thought "wow, this is how it is supposed to be".
I do not take narcotics unless I am have a horrendous day. 30 Vicodin last me a year or more. I don't like to take them for several reasons. 1. I can't function safely on them. 2. Make me feel loopy. and 3. I don't want physicians thinking that I am drug seeking. I think physicians see the diagnosis of Fibro and think people are just drug seeking. I do take Neurontin (gabapentin) 900 mg 4 times daily. Scary part is, it does help the pain. So just imagine if I wasn't taking it! Ibuprofen is my best friend. Acetaminophen does nothing for me nor Naproxen.  I do stretching exercises and sometimes I go for a light massage. That does seem to help. Since medical marijuana is illegal in Ohio (FYI, it will be on the Ohio ballot next year) I guess I will stick with my ibuprofen, light stretching and massage. Oh, and lidoderm patches.
Pain that I can't stand the most is (bear with me, may sound crazy) my skin. At times my skin hurts. It feels like someone is rubbing on your sunburn. It hurts to wear clothes. I hate bras! Can't stand to be touched. Shower water running on my skin sometimes hurts, very irritating. Sometimes I will just lay on my bed nothing but underwear on because my skin hurts so bad. I do notice it more when I am tired and defiantly when I am hot.
I am just tired of being in pain everyday. There has to be something better. Muscle spasms, joint pain, skin pain (?) and fatigue just wears you down. Not just physically but mentally. I am hoping for a better diagnosis, treatment or something when I go back to Cleveland Clinic this month.
Something gotta give!!!


Monday, September 9, 2013

Muscle aches and stupid twitchy foot!

I can tell that today was not going to be a good day. Muscle and joint pain was increased. My arms feel so weighted. And when attempting to lift something, the pain would shoot. This also came with weakness. I attempted to make dinner tonight and could bearly lift the skillet. By the time I finished dinner, I didn't want to it eat. I just wanted to go lay down. The heat from the oven and stove increased my fatigue. Not only that, moving around cooking, bending over looking for the correct pan and concentration on the recipe increased my fatigue. Not to mention I already wasn't feeling good.
Stupid twitchy foot! If that is even the best description for it. I have said before that I get these weird sensations in my foot. Flares up when I move around more, when fatigued or for no reason at all. Today, on the top of my right foot, near my ankle, I got this zapping, twitchy, vibrating, annoying as hell feeling. Doesn't hurt, just annoying.
So, here it is around 8:30 pm, jammies on, feet up and nighty night medicine on board!
I should have never even attempted cooking today but my bullheadedness got the best of me.

I should have called Dominos!
Good night!!!

Saturday, September 7, 2013

Being appreciated....

I have a teenage daughter. If you have a teenage daughter, you know how much fun it can be (Please note the sarcasm here) I am truly getting paid back for my teen years. Again, mom and dad, I am SO SORRY! Overall I do have a great teenager. She gets good grades, honors classes, not on drugs or pregnant. So, I really can't complain. She has a friend who is not living with her mother and hasn't for  some time now. She lives with her grandparents and gets to visit occasionally with her mom. Very sweet girl. This evening, my daugter said "mom we don't get to spend enough time together". I just looked at her. "Ok, you feeling alright?" She tells me "I just feel so bad for my friend because she doesn't really have a mom and I really do appreciate you. I am lucky". My first thought was how sweet and great that my daughter appreciates me. My second thought was to get a pen and paper so she could write it down and date it so I can show her in the future when she is pissed off at me. LOL
I have come to a realization that my daughter is so much smarter than I will ever be. She has a great sense of humor, quick witted, absolutely beautiful and speaks her mind. She sees through all the bull and says what she thinks. I admire her. I am the lucky one to have such a fantastic daughter!!



Weird sensations that I have...Sticky hands and buzzing legs!

I experience several weird sensations in my extremities. Very hard to explain my legs so I will start out with my hands. LOL
My hands do a few weird things. The can get fire red and feel like they are on fire. No reason at all. I would just be sitting there and my hands are red and HOT! My feet get that way too. I have had to put cold packs on them. Then sometimes it feels like I want to pull my fingers off. They will ache so bad. I will bend my wrists inward. I guess to stretch them. Another strange sensation is when I wash my hands, they will feel sticky to me. The first time I noticed it I thought that the towel I dried them with had jelly on it. So I re-washed and used another towel. Still sticky! It was so bad that you would have thought I had OCD as many times as I washed and re-washed my hands. My husband and kids were looking at me like I was crazy. I said "feel them! They are sticky!" No, no they are not said my hubby. I'm used to it now and I have learned if I lay my hands still, the "stickiness" feeling will go away. Still annoying though.
My legs...One night in May, I was laying in bed and all of the sudden, my right leg, from the mid foot to mid calf, was on fire. I mean it HURT because it was so hot. Then after about 20 minutes, I started getting a buzzing, vibrating, zapping feeling. Very light sensation. I don't really even know how to explain it.  That remains intermittent now. I do get tingling and numbness sensation in my right calf-foot. Now it constantly feels like I have a sock on or someone is applying very light pressure. Sometimes I have this cold sensation. The best way I can think of to describe it, it's like a drop of water running down my leg. Very, very odd! 
The only other odd sensation that I have is in my face. 2 things. 1. One side of my face will be hot. This is on the left side of my face (left eye was optic neuritis). Hubby and I have decided to stop telling physicians this symptom because we get looks like "seriously, now you are just making things up". My husband will tell them "I have seen and felt it. It does happen". 2. When I bend my neck down (chin to chest or should I say chins) I get pin prickly sensation on the left side of my face. Weird but whatever!
So, that is all my weird sensations that I have going on. No explanation yet on the causes other than I'm apparently nuts!

Thursday, September 5, 2013

I hate feeling this way! Not a good day!

I woke up feeling half way decent. My sister took me to the grocery store. Got what I needed and exhausted by the time I got home. I thought ok, I will lay down and I will feel better. WRONG! I still don't feel good. I feel drained. My legs and arms feel heavy. My legs have like a buzzing, vibrating sensation. Tremors are light but constant in my hands. Not bad, just annoying. My head feels weird. I really don't know how to explain it. Heavy but my mind is foggy? It's like someone has a hold of my head. Very light pressure. Dizziness and unsteadiness. My words are hard to find. I just want to go to bed. And that's what I am going to do! Hopefully tomorrow will be better! Good night all!

Wednesday, September 4, 2013

I hate the heat! Uhthoff's Syndrome and Me...

I hate summer! I hate hot temperatures! From showering to being outside!  I have Uhthoff's Syndrome. This is a condition in which heat increases my neurological symptoms. My vision worsens (left eye only, optic neuritis) I feel flu like at times. The fatigue is SEVERE! I start to feel weakness on the right side of my body. I feel like I am going to fall over at anytime. My body feels so heavy at times. When walking, I have to remind my legs to move.I have to get into a cool room, lay down and sometimes not move. The symptoms do decrease after I get cool and rest. My shower temp has to be turned down. Not more hot showers. It bet it's lukewarm. Sometimes cold according to my daughter. I mostly shower at night because it will cause fatigue. What the heck, going to bed anyways! So yeah, I really hate the HEAT! Here is a link for a quick overview of  Uhthoff's Syndrome. If you want more information check out this great link from the National MS Society.

My teenage daughter plays softball. Of course, in the summer. I made a promise to her that I would try my damnest to go to her games. The only thing that saved me was Frogg Toggs Chilly Pads. I LOVE these things. They are a towel that you wet down with warm water and it stays cool for several hours. It really does! I would always bring a bottle of water to cool it down again if needed. So, I would have one wrapped around my neck and another acrossed my legs. Kept me cool! Ok, I know I had to have been a site to see. Here I am lathered in sunscreen (that's another post lol), in a reclined sun  chair so I can keep my legs up to lay down. Frogg Toggs on my neck and legs. All the while, holding an umbrella to keep the sun off of me. I know that I looked ridiculous but you know what, I didn't care what people thought. I only cared what my daughter thought. Her mom was at the game toughing it out for her!  I have an amazing daughter!

Oh, here is the link for the  Frogg Toggs Chilly Pads...Check out  Amazon too. They usually have them cheaper and neater prints (Pink zebra print is my next buy!). Also, the first one I picked up was at Dick's Sporting Goods.
Love them!! Hate heat and Uhthoff's!





Monday, September 2, 2013

Teaching my 16 yr old to drive...post Optic Neuritis

My 16 year old son Jake is learning how to drive. What a challenge for both of us! Since my optic neuritis attack and lack of spiatal preception (unable to determine the distance between objects and yourself) I am unable to drive. Though I realized that I am not the best teacher for Jake. Not to mention, when I get fatigued, I get snippy. Jake will drive me to the grocery store. So, after getting my groceries, I'm fatigued, snippy and my vision changes. Not the best combination when teaching a kid to drive. (BTW, "snippy" is the nicest, non offensive word that I can use to explain my mood lol)
Poor kid. I am always thinking he is going to hit a parked car. So I am yelling at him. He's looking at me like I'm crazy "Mom, I have enough room. I'm not going to hit it!" It's just not a good learning environment.
His dad and I have decided that I shouldn't drive with Jake anymore. Not  until he improves. I don't want to discourage him and I think that is what I am doing to him. And...my nerves just can't take it lol