Do You Feel Guilty? I Do.

I write this blog thinking of all the people out there men and women a like that have illnesses that are not noticed like the flu or something like Cancer where you have to get Chemotherapy. I get tired on a daily basis and I just want to take a nap but then I feel so bad for wanting to do that when I haven't really done much to cause my fatigue but having Multiple Sclerosis causes bouts of tiredness. So as I go on day to day I have my bouts with being tired and also not feeling well. I always feel like I am saying something hurts or doesn't feel good.

I know that my hubby does not try to make me feel bad on purpose but when he makes comments about how much I sleep or says something about me not feeling good again it makes me feel bad. Being with someone who has no idea how you feel is hard because you are going through something that they have no clue about. You can say how you feel a million times over  but they still won't understand how your body feels on a regular basis. He tells me to do something about my health which I know I need to do but it is so hard to figure out where I should begin. I have lost a little weight and done so by cutting out some foods and watching what I eat and how much. I wish that my hubby could understand what I feel like on a daily basis and know that I hate feeling this way but I really can't change it.

Sometimes I wish that I would run a fever or maybe throw up so that he can see that I don't just say I don't feel well. I wish I could give him more evidence of how I feel. So to any of you out there who feel like I do just know that you are not alone.

Now I Have ........

Well a few weeks back I had a Endoscopy done to look for what could be causing me to have chest pains lets just say nothing came of that. Except for the fact that I had chest pains afterward and I had to go to the Emergency Room which is always my favorite place to waste time. When I was at the E.R. they did a CT of my chest and they didn't find anything wrong with my chest but they did accidently find that I have something on my Thyroid.

So now they found something on my Thyroid which means I had to go to my doctor and then he had to refer me for a Ultrasound of my neck. The Ultrasound shows three nodules on my Thyroid one is about half an inch and the others are real small . So now you are probably asking what does she have to go through now well now I have to have a needle put into my neck so that they can biopsy the nodule or nodules but I have to wait for a month before I can find out anything about it. Doctors don't seem to understand that when you have a lump of any kind that you want to get it checked right away because it kind of just puts your happy life on hold until you know that it is not bad..

From what I understand Thyroid Cancer is very rare and happens more in men than in women. I think there is like a 7% chance that it could be cancer so I am not horribly concerned but still it sucks having to wait so long to find out what the conclusion is to this chapter in my life.

On top of that I have to go and see my Neurologist and have a MRI to see if I have lesions on my brain from the M.S. that I have. My life is so full of doctors appointments. Sometimes I hate being me.

CCSVI? Can It Help?

Let me first off try to explain what CCSVI is it stands for Chronic Cerebrospinal Venous Insufficiency. CCSVI is a new procedure that researchers are investigating to see if it is possibly a helpful solution to some M.S. patients. 

What happens with this is that they take a patient with Multiple Sclerosis and do imaging of their veins that are coming from the brain and if these veins are some how blocked or flowing the wrong way they will go in with a little device that goes up into the vein and expands using a small balloon that opens up the veins so that they will flow correctly. 

As a result of opening the veins back up to the way they should be doctors are hoping that it will help give some relief to people with Multiple Sclerosis symptoms. So far there has been little success with the out come of the patients. There have been some relief of some symptoms in some patients but not all. This procedure is by no means a cure for Multiple Sclerosis but it might help doctors in finding a cure. For now at least if it does relieve some symptoms that would be better than nothing I guess.

Pins and Needles

I get this feeling sometimes through out my body that feels like I am being poked by pins and needles. I know that as a part of M.S. you can have misfires in your nerves which feels like tingling or like I am being prodded by sharp instruments

Like tonight as I am using the internet my hand starts to tickle right around my knuckles and I keep thinking that oh I must have a hair on top of my hand but after several times of looking at my hand and rubbing my hand I made the conclusion that the feeling was in my hand not on top. It almost felt like a tickling sensation.

I don't know about other people with Multiple Sclerosis but I get a lot of pain in my hands and a lot of shaking of my hands. When my muscles twitch it starts to get frustrating because you want it to stop.

Wow What a Headache

A couple nights ago I had one of the few worst headaches of my life. I thought my head was going to burst. I was crying because it hurt so bad. I think my neck muscles got really tight and that may have caused my headache. I only had a headache on the right side of my head and it hurt so bad. I have migraines to begin with but most of the time I can catch them right before they start. When I feel a headache coming on I take my migraine medicine before they get to bad and normally they work with in a half hour. I tried taking my headaches pills but they didn't even make a dent . Then I had a thought that if it is my neck muscles maybe if I take a muscle relaxer it would help so I took two and that seem to work.

The fallowing day I was so tired and my body just hurt all over and the side of my head where I had the headache still felt weird. I know having M.S. that I can have symptoms that I can't explain and I don't know if it was caused by M.S. our not. I hope that I can avoid it ever happening again but most likely not.

Surgery Number ?

So on August 9th I had what I consider my 10th surgery maybe. I thought it was going  to be easy sailing going through the recovery but no such luck. I told the people at the hospital 5 times or more not to use steri strips because I have a allergic reaction to the adhesive on the strips. They wrote it down and noted it in my chart that no steri  strips could be used. So I thought I was in the clear but then I get home and I start to itch and I decided to pull off the bandages they had on my incisions and when I did there was steri strips.

I had  what the call tape burn on all of my incisions and I was so itchy. The stuff was weeping fluid like a real burn with blisters. I wanted to crawl out of my skin from all the itching I was feeling.

The procedure I had done was called a Oophorectomy. They used a robot to remove my let ovary and remove any endometriosis that they might find and any Ovarian cysts that may have been in there.

I am now two weeks into recovery and I am starting to feel less itchy but one of my incisions itches more than the rest and is warm to the touch . I wonder if an infection maybe setting in. I hope not because that  is the last thing I need right now.

Remember Life is so Precious

So I woke up this morning to the news that my Grandpa had a stroke at 1am last night and he was flown to Harborview hospital in Seattle. I have been reminded today how special life is and that we should enjoy each other while we can before it is too late. Always remember to tell each other that you love one another and never let anything get in the way of letting your loved ones know how much you care.

 My Grandpa has been there through my whole life and I can't imagine life without him here but I know that day will come someday. My Grandpa is 83 years old so I know that time is drawing nearer. I love him with all my heart and he is the only Grandpa I have left. I hope he recovers quickly.

Endometriosis Surgery Again

On August 9th I will have probably my 10th laproscopic surgery. It will be to remove cysts and any endo lesions that they fine as well as take out my left ovary. My left ovary has been causing me problems for a while now so it is time for it to go. I hope by taking out that ovary that the cysts won't show up as often. I hate how much these cysts cause problems with my body and my life. I am tired of being in pain all the time and I just wish that I could get a good med regamine to help get rid of the pain.

Pain and Burning

So the last like week I have been having a burning in between my fingers on my right hand . It is a really odd sensation. It feels like someone it holding a lighter to my hand or putting it really close to a wood stove.

Now on top of that I am having pain and what I believe to be swelling in my fingers as well. I read that one possible issue it could be is from my Multiple Sclerosis . M.S. has a tendency to cause issues with the limbs of your body. I really hope it goes away soon . I know that I will never get rid of my M.S. but at least I can hope for some of the pains to go away.

Ovary Removal Maybe

I have been having bad pains in my left lower abdomen so much so that I went to the E.R. and I was given really good pain meds. Dilaudid works wonders. Anyway I found out that I have a small cyst on my left ovary. I have had ovarian cysts before but this one hurt pretty good. I have been thinking that it might be time to have that ovary taken out. I have had my uterus out because of Endometriosis. As of now my Endometriosis has not come back but you can't tell that unless you have a Laproscopic procedure which just sucks because they should have a machine that can see that so you don't have to go through unneeded surgery.

I know that having my ovary out might not solve my problem because I will still have my right one. Who knows if I will get cysts on my right but I am willing to take the chance since the left one has caused the most pain. The cyst that I had this time has really messed with my bladder. I was tested for a urine infection because of the pain I have been having when I pee. It has subsided for now but I am waiting to talk to my Gynecologist which takes forever to get a appointment. Anyway take care all.

Complaining

I have found that if you don' t suffer in silence sometimes you get told that you are complaining to much. I have found that to be true so I have tried to lay off saying everything hurts. I only say something if it is really bothersome.

M.S Another Day of Tingling and Coughing

      Today is another day full of tingling sensations. I have them in my arms and legs. The weird thing is when your body feels like it wants to jump on its own. I try to keep control of it but sometimes it can be hard. I also have not gotten over the cough that I have had for almost a month and now when I cough really hard I get light headed. 


I have been getting sleepy by afternoon and I try not to take a nap. On Saturday night I had a muscle spasm in my back and it was painful. It took muscle relaxers,tylenol and ibuprofin. I was so tired  on Sunday I could barely wake up but thankfully I have a great fiance that got up and made breakfast for our kids. I am very thankful that he was there for me the night before and that fallowing morning. When I had my spasm on Saturday night he was there and was rubbing my back and helping me stretch since he has issues with back spasms. I will write again shortly.

Suffering Not so Silently

   Now that I know that I have M.S. I have a harder time keeping quiet about the disease. I always think that if something is wrong it has to do with the M.S. diagnosis. I have the shakes a lot as time seems to go on and my brain does not want to work anymore. I can never think about what I want to say it just won't come out of my mouth. It has gotten to the point where when I talk I have to think so hard about the words that I am trying to say and by the time it does come out someone has already said it for me. I am so sorry for the people who are way worse off than me.

M.S. a Better day

                                                                    Another Day
Well this morning I am not feeling as good as I would like to . My left had has a prickly sensation in it. I am off balance this morning I feel like I am going to fall over every time that I walk. I am feeling so shaky to. I hope that I can make it through the day without falling asleep because I am really worn out.
                                                                
                                                                     A Pretty Good Day
I have had a good day no real tremors and the pain in my right hip seems a little better for once. I had this pain for over a month and I am surprised at how it has been today. This day has given me hope for many more good days to come. I also broke the news of my M.S. diagnosis to my Grandma and she took it really well. She wanted to know what the doctors are going to do for me . I told her that I am doing good for now so I don't need all the big medicines that the people with full blown M.S. have. The medication that most M.S. patients take are injections that have to be taken daily or a couple times a week. I am so lucky that I don't have to take those kind of meds yet. I have taken all my medications for the night and I am getting ready for bed.

M.S. Is the diagnosis now what.

                                                         So What Now   1/11/2012

Today is the beginning of the rest of my life. I was told today that I have Multiple Sclerosis but that it is benign but what does that mean that I am okay for now but what about a week from now or a year now. My doctor told me that he doesn't think that I need any of the injection medications that they give M.S. patients which I am taking that as a great thing.
I was reading that my benign M.S. could become  full blown aggressive and then it could stop but who knows because M.S. is unpredictable and you never know what the next day holds. If you have this disease you are supposed to live day to day and not think about what bad stuff could be in store for the future.
I am trying to process this information the best that I can and I feel like crying but what will it do for me. It won't make anything better. I always knew there was something wrong with me because my body has just bee falling apart over the last 3 years maybe more. I have had so many achs and pains over last couple years I always new something had to be wrong. I am glad to know that I am not crazy.
I got a lot of I'm sorrys today from various people that I told. I am glad that I have family and friends to lean on in a time of need. I guess that now I will just have to live day to day and not worry about what lies ahead for me.
                                                           The Day After 1/12/2012
So I woke up today thinking that yesterday didn't happen . I thought that I dreamed about it until my fiance said something about it. I was hoping I could forget that it happened but I guess it is like that big white elephant in the room it is there but you don't want to see it. I hope that with time I will just learn to live with it and I  guess I already have because I have been putting up with this stuff for at least three years.
I am tired today but that is because I took so much medicines last night that it made me extra sleepy. I tried out the new meds that my doctor gave me that is suppose to help with the pain in my right hip but so far I have not had any improvement but I guess I should give it more time than just a day. The new meds the doctor gave me are supposed to help with muscle spascisity. I guess it will help to loosen the muscles.
I felt something different today . I was riding in the car and my nose started to feel like there was static in it or pins and needles how ever you want to put it. I kept rubbing my nose but nothing happened. It is still happening off and on.

Now I am with my children and we are on our way to my mom's and dad's . I can't wait to see them . I have missed them very much. My mom didn't really tell my dad to much about it just so he wouldn't worry since he already worries about my sister and I a lot. I don't want my mom and dad to worry anymore that they have to about me because my sister is going through the hardest time of her life right now. Her husband is acting like a teenager and running around like he has no cares in the world. I feel so bad that she will have to leave her house move in with my mom and dad . Then she will have to get a job and she has not worked at all except for one day. She also has to put her daughter in a new school and take care of her while working which is a hard thing to do.

I told my sister about my diagnosis and it sounded like she wanted to cry but she is emotional about everything because of dealing with the ups and downs of her life. I wish I could do more for her than what I am doing but I don't know what I can do except be here for her and support her any way I can.
Now I am going to my Mom's and I will have to sleep on a air mattress so getting up and down should be loads of fun. My right hip area has been hurting for a month now and my doctor says it is all muscle and so he is sending me to a physical therapist. I really hope that therapy will help the pain go away. I feel like a 70 year old woman because it hurts to get up and down from sitting and I would love to not hurt as bad as I do now. I am 30 years old so I should feel younger than I do.
                                                                       
                                                            What This Day Held Was
So today I woke up pretty well I wasn't feeling to bad. Now that the day has ended I feel like I have been hit by a truck. My hip is starting to hurt more now than it has all day and I am getting shakier by the minute. I am getting pretty tired to. It was a busy day so I am worn out. I guess it is just about time to go to bed so that I can get some rest and hope this shaking stops.