When I almost lost my son

June 2013 was a time of year that something very unexpected happened in my life in regards to being a mother. This was when I almost lost my son Michael, who was 15 years old at the time.

Just a 2 weeks before he got sick, he was sick but we had no idea!

So around end of May 2013 my son went on a church outing to Defy Gravity, it is basically a place with a lot of trampolines. While he was there he bumped his lower back on one of the padded bars and really did not think much about it, and neither did my husband nor I. Raising boys you sort of get used to several bumps and bruises.

He then started to complain a couple weeks later of what sounded like a pulled muscle in his left hip. At that time we did not think of any connection between the incidents that occurred while he was on his church outing with defy gravity. I remember him several times saying it just ached, I would give him ibuprofen and he would be ok for a while. It was not until June that things started to get worse. We took him to the doctor and they said maybe he pulled a muscle. So we were not worried at that point, he did not look sick, just complaining of some aching in his left hip.

That June he signed up to go to a church camp with some of his friends from TN, they were actually going to be close to our area. I remember him being very excited about being able to go! They were going to have all sorts of activities such as paint ball, hiking and etc. He was super excited about it. My husband made the drive while I was at work so that he could attend.

That same evening my husband received a call from my son. My son was saying he could not stay! The pain was too horrible. So my husband made the 3-hour drive there to pick him up. I was unaware and assumed when I woke up for work that my husband had already left for work. I did the usual; I got ready for work and got my son ready for day care. That same day my husband took him to the doctor, this time at UNC, they ran X-rays and said that they did not see anything. But the doctor was a bit concerned so he told my husband to let him know if anything got worse. I did not find out until I returned home from work, and I was a bit worried, but the doctor said possibly it was a pulled muscle. My husband did not want me to worry and be distracted at work, if you are wondering why he did not tell me. So Michael was told to rest and take ibuprofen. I did notice by what my son had told me that the ibuprofen was making him feel a little better, but it was wearing off very quickly.

That Saturday my husband decided to take me out for a little date. It was then that I knew something was horribly wrong. Michael called us while we were on our date telling us he could barely walk and was in horrible pain and the ibuprofen was not doing anything. At this point I was worried but it was not until I got home that it really hit home that this was more than a pulled muscle. I thought to myself “How horrible of a mother am I to go on a date!” But I can’t hold to much guilt to that because that Friday the doctor said he was probably ok, but to just keep and eye on him and have him rest.

The doctor that my husband took him to at UNC gave us a direct number to reach him if things seemed to get worse. That early Sunday morning we called him. The doctor told us to get him straight to UNC hospital, and he even called the hospital to let them know we were on our way! He was taken straight back when we got there. That night that he called us while on our date, he broke every towel hanger in the bathrooms because he could not bear weight on his leg! How horrible!

You see Michael is an upbeat child, who puts on a strong face just like his mom. So it is hard to see when he is really in pain or really hurting because he is still positive in so many ways.

When we get to the hospital and we tell them what is going on, they assured us they were aware. They immediately hooked him up to IV and monitors. I remember his heart rate was out of control, it was very scary, and to look at him you would not think anything was wrong! Even then while we were at the hospital he was making jokes and laughing. So it still seemed surreal that we may possibly have a real emergency on our hands.

When we first got to the hospital

When they tried to move him to take him back for his MRI he immediately went from 103 to a fever of 105! And it hurt him so bad for them to transfer him to a bed to get an MRI. They started pain management at this point. I remember he got goofy on the pain medication and started making jokes again, while having a fever of 105! So we waited….. We waited to see the results of the MRI, we did not know what to expect. Finally some nurses came in a hurry and brought out two BacTAlert blood culture bottles for blood samples. At this point my exact thoughts were “SHIT just got real”! Sorry for my language, but I believe I actually said that to the nurses. The reason I say that is because at the time I actually worked for the company that made these blood culture bottles that check for sepsis, I did QC Microbiology on them. So I know this is really bad when they have to use them. It was after that when his doctor came in and gave us the news.

I took this photo to show my boss at the time how serious it was, these are the blood culture bottles that check for sepsis

He told us to prepare ourselves, I let him know I was well aware what was going on by the simple fact they used the BacTAlert blood culture bottles. He asked us to sit down. I remember these words… “Mam, your son has an infection in his hip, sacrum (lower spine) and femur and it is pretty bad.” As I sat there with my hand on my sons shoulder I was completely calm, probably calmer than I ever have been. I asked the doctor “So he will be admitted and placed on intravenous antibiotics, correct?” The doctor said, “Yes, you are correct!” He preceded to say “He should be ok after the antibiotics, but there is a chance he will not.” and went on to say “Had your son not been brought here today he would have been dead in 24 hours, do you understand how serious this is?” I replied with a simple “Yes.” Michael had sepsis and osteomyelitis. I will first give a definition, sepsis, bacterial blood infection and osteomyelitis, bone infection. And what complicated things more, was that he had  blood clots as well due to the infection.

I remember all of the emotions going on in my head, but never once did I doubt God through all of this. I just prayed constantly.

So after we got him to his room, I was advised that the following day that they wanted to take actual samples from the surrounding bone and muscles to identify the bacteria in order to treat him with the correct antibiotics.

My baby boy trying to do something, this I believe was day 3

He was first treated with vancomycin and another antibiotic and was on 4 different pain medications. Morphine, Oxycotin, intravenous Tylenol and an anti-inflammatory.  He was taking so many I cannot remember them all. But it was the first 2 days that were the hardest. I have never seen someone in so much pain, specifically my son. I remember them wheeling him down for the extraction procedure and him screaming in pain when they moved him and begging for more morphine. I remember screaming for the nurses to keep my son out of pain at least! And to get the medication to him as soon as possible! Yes I was made aware that my son might not make it, but I did not want him to be in horrible pain if he were not to make it. I know that sounds bad, but in times like this, times when you know they may be the worse, a time I thought I may loose my son, I did not want him in ANY pain during the process. As I said earlier, he was not a complainer, so I know he really was in pain, and I explained this to all the doctors and nurses! Luckily they listened.

The second night in the hospital I remember they still had not put him on a morphine drip, I cant remember the exact term for it. They only had him on Morphine injections, Oxycotin, intravenous Tylenol and the anti-inflammatory and it still was not cutting it. I was made aware that this was the time that we were going to see if he would make it… This was the crucial 48 hours, waiting to see if the antibiotics would do what they were made to do. It was a time that we were not real sure which way he would go, he could either get worse or better. I remember the bruises he got from receiving the injections in his stomach for the blood clots. And praying they did not travel to any other part of his body. Praying he would not have a stroke, praying they would not travel to his lungs.. Just constant praying while I smiled, held his hand, and remained calm… for him.

I remember that night more vividly than anything I have ever experienced, I stayed at his side, and I did not want to leave him for a single second! I remember us talking and praying. I remember him telling me how bad he hurt, and I told him just layback and pray son… lay back and pray. God has his will and we are going to get through this. At one point he was able to doze of for a moment after a morphine injection, I was happy he was getting even a few minutes of rest. Then all the alarms from the machines went off he woke up, I remember the look on his face, and it was a look I did not want to see.. It was the look a child gives a parent, the look that the parent has all the answers, the look that they need comfort. He asked in a calm groggy lethargic voice “Mom am I ok, why are all the alarms going off?” I replied while holding and rubbing his cold hand “Sweetheart, its all ok, its just an air bubble in your IV, I will have the nurses come fix it?” I noticed his oxygen was very low, between 80 and 85 and his heart rate was around 250, while he was at rest. I left the room and the doctor was actually watching all of his vitals on the screen, she knew what questions I had. I looked at her and said, “It’s the sepsis isn’t it?” She looked at me and said, “Yes, it is affecting all of his organs and we are hoping that tomorrow he will pull out of this.” I felt the tears start to build up and I held them back. Because I did not want to go back into the room crying, I did not want him to be weak in anyway…

Day 7 and first day outside

Day 3 Big brother came to see his little brother

We both had one of these that we kept with us at all times

He did pull through! By the next evening everything was starting to get a little better and they had him on intravenous morphine so he could push a button. The day after that the bacteria was identified as Staphylococcus aureus and not Methicillin Resistant Staphylococcus aureus (MRSA). He spent 8 days in the hospital and 8 weeks on IV antibiotics that we administered at home.  I could go on and on about this, but I think this is good enough for now. This was a very hard time for our family and to this day (He is now 17) I check on him at night LOL. We grew so close throughout this, and we are still very close today.

Before I was diagnosed with DRD. He was very scared. And I think it is because of the bond that we already had while he was in the hospital that got even stronger. He now comes and checks on me sometimes at night too, but since my diagnosis not so much, it has eased his worries.

I wish I could have gone into more details. But then this post would be very long!

One thing I can say, is not once did we blame God. We prayed a lot together, I know he was saved so I had no worries about were he would be if he had passed. And I think that actually gave me a little comfort and him comfort as well. But still to this day I worry if he gets sick, and he still is not the same, his immune system is low and he fatigues a lot easier.

To all parents, take what your kids say to you seriously. We did, and even when we did, we almost did not get him to the hospital in time. I cannot imagine my life with out him. And I mourn for those parents who have lost their children too early.

God Bless! More picture below :)

 His very last IV bad after 8 long weeks!

 Just after He got out of the hospital with his little brother.

 HE got to go to PROM!!!!!!!!!!!!

Mom giving the Kiss of, my son is now a big boy but always my baby boy!

2015 and all the little things

So it has been a very interesting few days, just before the start of 2015. So many good things as well :)

I found a support group for Dopa Responsive Dystonia, and wow it has been such a big help. It is nice getting to talk to people that truly understand what you have gone through and what you are going through! I had a very nice conversation with one of the members and I will have to say, that yes it was just an online conversation, but for me it was so much more than that! It was just nice sharing videos and just talking because I have felt so alone at times when I would try to explain it to my friends. When I would they would say things like, “Oh Dawn you’ll be fine I am sure it is just stress, don’t worry.” I know they meant well, but hearing stuff like that over and over again leaves you in a very lonely place. I eventually really stopped talking to a lot of people because well…. I was alone. I do have a few close friends I talk with though. Over the past years I have lost contact with so many people, even my family members, but I am now beginning to come out of that shell of being silent.

Another interesting thing that came out of the group is someone who has DRD and had been misdiagnosed for 33 years with CP. I had watched her video online and thought wow, this lady is absolutely amazing and so positive! And it was nice that I actually got the chance to tell her how inspiring she was! I have been reading through her blog and it is so inspiring to me! In her heading she has “It’s about the little things.” I thought that was really neat because I am always saying “Its all about the little things in life!” “You can not appreciate the big things if you do not appreciate all the wonderful little things!” So seeing that gave me a warm fuzzy. The strength that she has and how positive she is, is amazing. I have also been connected to other peoples blogs and it is nice to not feel so alone and read that I am not the only one that has struggled and such. All I can say is wow, it is nice to not be alone!

So in one of my conversations I had mentioned some of the funny things my children have said to me as well as other people while I have been going through this and she suggested that I share them in my blog, so here goes!

In Regards to my Dystonia, things my children have said:

“You should be a fill in on the walking dead, because you look like one of the zombies walking!”

“You look like a Robot!” (Then they would make electronic robot sounds)

“I bet you could do the Robot really good!”

None of these comments upset me because I know they are just kidding, we all joke with each other in our home, and I actually thought it was funny and laugh with them.

While I was on vacation at Tangier Island I was using my cane (this was before my diagnosis) an older man came up to me and asked, “Why does a young lady like you have to use a cane to walk?” I looked at him, smiled and said “It’s my portable stripper pole!” I thought him and his wife were going to fall over laughing ha ha. Then I asked him, “So why do you have a cane?” He replied, “It’s to fight the ladies off!” We then had a nice conversation and I explained I was not sure at the moment what was wrong.

Most of the time people just stare and not say a word. Honestly I would rather someone just ask me. I do not think that there is anything wrong with having a little bit of a sense of humor, I mean I rather make a silly joke than be bitter about something that I can not help. But I will admit when I first used it at work, I did get kind of tired of people saying stuff, and asking constantly, at times it was literally to the point it was rude. There was one guy that would ask me about it literally every single day! LOL oh well

Here recently I woke up from a nap and had forgotten my medication. My husband and son seen me walking through the house and it was around 1pm in the afternoon. My husband says loudly, “Dawn! How much have you been drinking! Its barely past noon!” My son chimes in saying “Ya mom your walking like a lurker!, How much did you drink!” I let them both know that I had not had anything at all! And that I just did not take my medication. Then they felt bad, but I told them not too. In their defense I had a wine glass in my hand that I was taking to the kitchen from the night before lol, so I am sure it looked that way ha ha. All I can do is laugh about it.

Well I just wanted to share some positive things and funny things that have been going on. This morning was kinda hard, I woke up and could hardly move my entire body, I could move it but it was very, very slow and stiff and was very painful, it was actually the pain that woke me. And I was getting the horrible choking feeling in my throat. I was able to wake my husband and he was kind enough to get all my meds for me and give me a nice massage, so sweet. This is something that has happened before, but I suppose I was not expecting it to happen, but I guess it will still happen from time to time. What I have learned from the support group for DRD that even if you are on the medication, stress, high protein diet, lack of sleep and over doing it will cause symptoms.  So here I was thinking ALL my symptoms would just be gone, but ummmm I just have to make sure I take good care of myself. I am sure I will learn a lot more as I read through blogs and the support group page for ways not to over do things and etc.

So this new year of 2015 has started with a new perspective about all of this, and I am feeling so much more hope everyday. It is not the end! It is the beginning of something new! I want to help inspire others, encourage others and just live life! As I always say, it is all about perspective! And it is all about the little things in life.

Happy New Year World!

Coming to Terms with my journey of life with Dystonia (DRD)

Are you ready! Yes it is finally here! More ramblings of my unique yet ordinary life.

So Christmas has come and pass, and we honestly did not think that it would happen at all this year. But it did. So many friends helped us out and the kids said it was the best Christmas ever! We were so worried at the beginning of December because we knew that we would only have enough money for the necessities. But look, God came through, yes Christmas is not all about gifts, I know that and I teach my children that, but I was so happy to see all their smiling faces when they were opening gifts. The house was a wreck, but we just let them play and enjoy the time. Sometimes you just need to let kids be kids, and Christmas is one of those days that we just say, forget about everything!

Speaking of Christmas, here comes my part about Dystonia, yes I am going there ha ha. A good friend of mine did something very special for our family. She heard about the tough time we were having and came to the house with a special delivery. Gifts for the whole family, so sweet! I just about cried when she showed up and I was very happy.

Later that day I received a message from her, she was wondering if I was angry and upset with her because she and others got together to get gifts for us. Of course I was not. Well here is the part about Dystonia I think I despise the most, my facial expressions. Because of the low dopamine levels, it affects my facial expressions. My eyes do not smile like they used to when I am happy. And sometimes my smiles look very forced. Well, because they are ha ha. Not because I want them to be, but because my facial muscle just will not do it all the way. You get kind of a masked face, similar to what happens in Parkinson’s disease.

Before I knew what was going on with me, frankly for several years. I always wondered, I mean I knew I was stiff, but I wondered why so many people would think I was so high strung or stressed out. When I was diagnosed I read about the masked face, and it was due to my dystonia. I always wondered why in some home videos and even in some pictures, when I was happy and thought I was smiling nicely it did not look that way, I looked kind of like a blank person. I think sometimes its is worse than other times. Dystonia, particualry Dopa Responsive Dystonis has so many symptoms because for me it affects my entire body. So even just showing your emotions can be hard. I have been picked at so many times by co workers thinking I was stressed out when I was not, or nervous because I was stiff, had a blank face and sometimes shaking. I remember one particular incident where a co worker (who was not very nice) stopped me and said “Dawn, you need to relax and calm down”. I tried to tell him that I was not stressed out at all. I remember coming home and just cried so hard because it hurt. I was so tired of people assuming I felt one way when I really did not and I could not understand why my body was doing what it was to me! There have been times my kids think I am angry or upset as well. But now that we know what is causing it, they don’t think that as much HA HA, they do still ask me to make sure from time to time.

Yes I am on medication that helps, but I have done some reading and it stated that if you go a long time without dopamine treatment, the facial expression part may remain, ie the blank face. This makes me sad because as human beings we use body language a lot. And not being able to show the proper facial response makes it hard for people to see how I am feeling. They either think I am upset, not happy or when it is something serious that I really don’t care because I just have that strange blank gaze. I really hope in time that this changes. And there are somedays that it is not like that. I can only hope at this point right.

I have been dealing with a lot of sadness lately, and maybe Christmas had a little to do with that. Yes all my children were happy, we have plenty of food and a roof over their heads. But now that I am not working, we are so broke! I go to so many doctors appointments and have to pay for so many co pays that it is literally draining us dry. I know I have to go to the doctor, but I have considered just not going because it is such a hardship on us right now. I have so much guilt about all of this, even though none of it is in my control. I have guilt because my husband is very stressed about finances. Like I said now one is suffering, but we literally don’t have anything left for anything extra. I know all the kids understand, but I really hate telling them no to things sometimes. I hate saying things like … “we don’t have the money for this… “, “I don’t have the gas money to drive here…”

For instance, the girls received gift cards for cloths from their mom for Christmas to go shopping at the mall. They each had 100 dollars for cloths. Normally if my children when over by a few dollars I could pay the difference. But now I do not, so I had to calculate up everything they wanted to include tax so that they would not be embarrassed and have to put stuff back. Another sad thing is my boys went shopping with us, and they had to watch them buy all new stuff and I could not buy anything for them because I did not have the money.  My older son understood, but little Adan did not, he kept asking and asking and I kept telling him I did not have the money. And he said, “But Hosanna and Grace are getting to buy new stuff.” Don’t think that I did not get happiness out of taking the girls shopping, I though it was so nice their mom did that for them, and they did need more jeans. But it breaks my heart when I can not do the same for all of them.

Now don’t think Adan does not have cloths! My friend that made that delivery gave him so many cloths and they were so so nice! Yes they were used, but you could not tell and Adan was so happy to get them! He has been trying new outfits all week LOL. But I guess its just the fact of shopping, of course he is going to want to shop too when he sees his sisters doing it LOL. I think next time I will just take them, that way I do not have to feel bad for Adan, even though I know he has everything he needs and nice stuff. He did receive a brand new pair of shoes from the church, and he was so excited when he got them! He had been wanting a new pair of converse for a while lol. I normally get all of our stuff at thrift shops, but I know its nice to have something like new shoes every now and then. Me, I love getting cloths given to me and from thrift shops LOL you can find really nice stuff, and I have received really nice cloths. I am definitely not in any need lol

So yes I have been sad. But I know eventually all this will be better and things will get better, we just had a lot of stuff hit us all at once.

I had to stop working because my Dystonia reached the point I had to stop working and figure it out! I could not walk without a cane, I could not use my hands due to tremors, I could not talk clearly and I would choke when I ate, Just to name a few symptoms. My body felt like I was turinging into a trembling stiff statue! So then why to I feel guilty? Because! I love working and I get joy out of providing to my family! I used to go and get each of the kids something special all the time, or I would decided to have a movie night and get all kinds of candy, chips, popcorn and etc. and make it super fun! I once went and bought grace a bunch of baking supplies and pans from the dollar tree for her to practice baking! I hate not being able to do that right now! ARRRRRGGGGGGGGG

But I can do other things with them, like I am here everyday when they go home. Adan loves that! I am not so exausted and such from work. I have more time for them and my husband. And they love that I can cook more now LOL Well Grace likes to cook as well so she does some of that. I just let her do what ever she wants! She looks and recipe books and makes stuff up, I think that is so sweet. So I have to focus on all the good things.

Yes I am tired a lot, but I get most of my rest in while they are at school. And now since it is break they sleep in and so do I. They are all very understanding though, they know I am trying to get  used to all these meds.

About my meds, some days I am symptom free, and well some days I am not. Some days I am in horrible pain, but that is most days and I am used to that. Yesterday I had tremors and my neck and legs and back were dystonic, and it sort of frustrated me because I just want to be normal again. But I have my family and that is what matters the most of anything! They all love me and they seem, and say they are very happy!

I guess this is it for now, I will get through all of this! My doctor says I will need to at the very least be on temporary disability for a while so I can get all the care to get better. Physical Therapy, biofeedback, pain management and counseling to deal with having a chronic illness, I don’t mind any of it. But I really wish Duke would approve my charity care to at least cover the co pays because going to the doctors every week adds up. I have a lidocain infusion procedure next week and I have to go to PT. But I am worried how much the co pay will be for the infustion, and if I will have enough money to pay for the PT co pays AHHHHHHHH

Yep you guys, you got to hear me truly vent! This is just how I feel, and I am an honest person. Some people say I am strong, but remember everyone has to grieve and that’s what I am doing. I have been dealing with it better the past couple of days in regards to coming to terms with all of this and accepting it. Its funny, I thought I would be happier just knowing what I have. And now that I do, I am like wow… just wow… seriously… I lost my career… my dream…. I worked so hard for!

But life is more than that, I have my family… and frankly things could be much much worse!

Have a wonderful blessed week everyone! And wow did it feel good to vent LOL

Grief, Dystonia and Family: Find the positive and just face it!

So here I am thinking, that can be a dangerous thing, especially for me ha ha. I have so many thoughts about what my family and I have been going through lately. But I have to say that it could be worse, and I am sure many who have read or know anything about me feel the same. It can always be worse, right? Grief, what a nasty little word huh. But we all go through it in some way, shape or form at some point in our lives.

Grief, maybe I should Google the definition, nahhh that is no fun! I will give it in my words. Basically grief to me is the loss of something or also the fact of having to deal with something very hard. I have not looked up the exact meaning but for me this is what it is, and since this is my blog that is how I will refer to it, ha, there it is!

We all go through some sort of grief, whether it be the loss of a loved one or the loss of a job, or the loss of anything. But I do feel there are some forms of grief that are harder to deal with than others, even if the process of going through grief may be similar. Such as denial and etc. But I am not going to go into that, it’s boring, and frankly it can be googled ha ha.

I have always thought of myself as a very strong willed positive person, and probably most that meet me would say the same thing, at least those who have been around me a lot. I am normally energetic and I always try to find the good in something and the good in someone.  Then a big life-changing event comes! BOOM out of nowhere my human side kicks in, and I start going through the process of grief.

I suppose that is what I have been going through lately. Yes I can admit it, I am human and I can be weak at times to the human side of me no matter how positive of a person I am. And yes I have been through this as every human being has been as well at some point in life, and I have experienced it in several different ways throughout my life. But I always try to tell myself, “Wow Dawn, get over it, it could be worse!” But that does not mean I do not need to mentally go through the process of  it and experience the loss of what I am going through.

I do not write blogs to get pity from others, I write to release all the natural human emotions, and for theis simple fact I may be able to help someone. What if someone out there feels alone, and they need to feel, not so alone, and they come across something similar as my story? That is a wonderful thing! I say this because I have met only one other person that has the same diagnosis as me, and just hearing that I am not alone, and all about the struggles and feelings they go through, is well, I don’t know how to explain it. But I am not alone! Someone does understand! Woo hoo! It is a wonderful feeling! So I write, about what may be mundane to some, and life changing and inspirational to others. We all go through something, and right now this is my struggle, the diagnosis of Dopa Responsive Distonia, the loss of my career I worked so hard for, and just trying to manage family and health.

All of this is completely out of my control! That is one hard thing, because being a strong willed person it’s hard to say sometimes, “Ok, maybe I need to take it easy.” I say this because of my decline over the years, it did not happen all at once for me, but little by little I just got to where I could not be the same person I was, even the person I was the day before. I pushed, I tried, I struggled, I pushed harder, but still I was not the same. I did not have the same energy, everything made me tired, no matter how much coffee, I could not move faster, I just was not the same.  And now after many long years I have to face it! Yes I have to face it! This is another hard thing for someone who is strong willed! When strong willed people meet challenges it makes them try harder, but in my case I just could not try harder, my body just would not let me. My body tried to tell me, “Hey, Dawn! What’s up! You can’t do this! So to show you BOOM! TAKE THAT!” And guess what, I did not listen, I kept trying to push harder and harder, to combat the fatigue, to combat my ever weakening and stiffening muscles, and the 24/7 pain, and this made me even worse.  But I can be proud of one thing, I did it all with a big smile on my face and even at my worse, I would do my best to encourage others, that’s just me, that’s what I do. But there comes a time that even the encouragers must give in.

Don’t get me wrong, I was pushing for my doctors to figure out what was wrong, but I in know way wanted it to be something that would slow me down! Not me, I am Dawn! I work hard, play hard and love hard! I wanted a quick fix.

But now here I am, I have to face everything, I have to face my ever changing body, I have to face all these medications, I do not have a quick fix. I have to slow down and actually take care of myself. OH MY, that thought is absurd! I take care and provide for everyone else! It’s not supposed to be the other way around! Ha Ha.

So here I am rambling on, I guess I could go into more technical detail huh. I was relieved when my neurologist finally after all these years told me what was going on. He had an answer, and yes some medication to help. But I think I was not ready for it mentally, maybe I thought he would blow it off as every other doctor would and send me on my way. NOPE, here I am going to all these different doctors, suffering from horrible pain, and my body sometimes still will not work with me, on some days. Nope not a quick fix like I was thinking, something not in my control.

But what I can control is how I still contribute. No I am not working and I cannot work at the moment, even my exercise is limited. This is hard because I don’t want people to help take care of me, I want to contribute financially, I loved working as a microbiologist/scientist! I felt there was meaning in it. But sadly I was wrong, there is more to life than a title, more than what you contribute financially. Its called family!

I can control how I take care of my family, my home and my children. So see here I go again, I have found the good in something bad as I mentioned earlier, ha ha. Look at me still being positive about something huh! I will admit it is hard dealing with the loss of my job, but now I can take all that I focused on work, and put that were it is most important, my children, my family and my health.  This is funny, I’m trying to be serious and here I am with a big smile on my face thinking of all the cute things my kids say and how proud I am of all of them.  Maybe at some point I will go into more details of my Dystonia, but I suppose this is what I felt like writing about today.

My family is amazing! A perfect combination of every personality, both in my home and far away, sisters, cousins, aunts and uncles. And I am happy that I can find the good in my time of Grief. I am more than a microbilogist/scientist, I am a wife and a mother, a sister, a daugher, a niece and an aunt! And I could not be any happier about it. Yes some days are tough, but for strong willed people, that makes us try harder.

I’m not real sure about the point of this particular posting, but I think I just figured it out. No matter what you are going through, no matter what kind of grief you face. Simply stated, find the good, and the positive in it.

Typical Day and Inspiration, My children and family and the NC girl with MS.

So here I am again doing something that I enjoy doing. Writing about the ramblings of my mind and life.  I have so many topics that I want to write about. I actually make a list of them as they come to mind. Today was the first day I have felt well enough to sit at this computer and do some writing. Wow do I wish I still had a laptop! But I suppose it is a good thing that I do not, because I would probably write too much! And then there would not be much depth and meaning in my words as time went on.

Considering that this blog is named Dystonia Dawb, I thought I would write a little about that, and later write about all the other things on my list. Or maybe (evil grin) I may just write two posts today!

So a typical day for me, is quite interesting(to me) because all of my days seem not  typical, because it can change, but they are boring lately since I have been on this dreadful medical leave! Every day for me has a challenge, one in particular sticks out. It is the simple task of being able to get out of bed, I am not talking about waking up. It is the task of literally feeling well enough to get out of it! I am writing about this because I think it may shed light on what exactly I am going through and give people a bigger understanding of Dystonia, specifically Dopa Responsive Dystonia. At some point I will go through a timeline of all of my strange symptoms over the years, but I don’t feel that is interesting at this point.

So on a typical day I wake up (wait that is a typical day for everyone if your alive ha ha) , the time may vary depending on what time I actually fall asleep. There were several days that I slept way longer than I wanted to because my medications make me so tired.

Ok so here goes!

1.     I wake up and take my medication, one for my Dystonia ( sinemet ) and two others for pain Neurotin and Cymbalta.  (these may change because of my new diagnosis, I am hoping for some other pain medication because some days it is absolutely umbearable).

2.     I wait for my meds to kick in, this is when it gets a bit complicated because on any given day the pain medication may or may not work. The Sinemet always kicks in to some point (I have found my second dose of the day is the best). The neurotin, well that is hit or miss, I normally hope it will help. The Cymbalta is good because I has a counter effect to the neurotin, it wakes me up. The neurotin has a tendency as well as the sinemet to make me want to fall asleep. This is horrible! I say this because who wants to sleep their life away after sleeping all night! What makes matters worse is when I get up in the morning, every morning I only feel well for about 5 minutes. Just long enough to get up and use the bathroom and brush my teeth.  Then the pain throughout my entire body, to include the bottom of my feet kicks in.

3.     I lay in bed and hope the neurotin will work… about20 to 30 minutes after I have taken my sinemet I will eat some breakfast. I do this so that I ensure that I get the best possible absorption into my body. I normally will have a couple cups of coffee with it. The Sinemet makes me very drowsy.. blaaaa and some days very dizzy as well. But on a good day I will only be drowsy,  because when I am dizzy while laying in bed, even if I only eat oatmeal I will be nauseated as well. The reason that it makes me dizzy is because it fluctuates your blood pressure, my blood pressure will go very low. And when I walk, even though I can walk, I have to use my cane.

4.     So on a typical day I am in pain all over my body, even the soles of my feet for the first (Aprox) 3 hours , meaning the worse(most days, throughout the day). So I sit and read and drink coffee until I can get up.

5.     I take my Sinemet 4 times a day and Neurotin 3 times a day so at some point I have to eat lunch! This can be tricky especially due to the timing of my medication and being dizzy and nauseated. So what does a girl do? She facebook stalks her family and friends to pass the time ha ha. And I do a lot of reading about several different topics ( I love to read).

6.     4 hours later I take my Sinemet again and if I have not eaten lunch I eat around 20 to 30 minutes later I will have a light lunch.

7.     Ok this is on a good day (Today happened to be one of them) I will do my exercise routine. It consists of stretching and cardio on my exercise bike. Today I did a little extra which is against my doctors orders. But I felt like I wanted to do a little extra so I did sit ups and push ups.

8.     Then I do house cleaning. I enjoy doing this because I want the kids to be able to come home to a calm, clean and relaxing environment. Although there are chores for them to do of course. But I try not to have so much for them to do

.

9.     I start preparing for dinner. This happens before the kids get home. And some days it is earlier than the rest of the days.  But I start planning main course and side items etc.

10. Kids get home from school. I take the time to talk to each of them. The time can vary depending since each child gets home at a separate time. But I can always count on the first thing they do when they come home is come to see me, this is a good thing. And this is all 4 of them. They come and talk to me. Some days may be different etc. Depending on chores.. ie. If their rooms are destroyed etc. (we are working on that part ha ha)

11. Then I cook dinner.

12. Evening time is different, like tonight, we are going to talk, watch a show and do some crafts.  And Grace is going to make brownies ( she bumped her leg on the counter climbing tonight, poor thing, I have an ice pack on it now ) Did I mention I do first aid as well? LOL

13. Of course more meds etc etc.

14. Bedtime is different because some nights I fall right to sleep, some nights I toss and turn. Or if I fall asleep sometimes I wake up around 2 am in horrible pain.

So maybe now you may be able to see how a “Typical” day may be. I am not sure it I was able to show the ups and downs of it all. Of course there are other things that happen in between like phone calls, or possibly the kids arguing or etc. ha ha.

For me each day is met with a challenge, here are some of my questions I face:

           

1.     Will I hurt and be in pain all day today?

2.     Will my Sinemet work as well today?

3.     How stiff will I be today?

4.     What kind of stress will I encounter today that may make me worse?

5.     Will I be able to exercise today?

6.     Will the kids like dinner?

7.     Will the cold weather make my symptoms worse today.

8.     Will I be able to do anything today?

9.     Will I accomplish anything?

10. Did the kids have a good day?

11. How bad will my pain be at nighttime?

a.     I tend to have a cycle, pain in the morning, kinda normal mid day, and bad pain in the evening. It seems to be this way everyday. I smile through it all for the kids.

I am sure there are other things that arise. Now that I think about it this post is very boring and I wish I had written about something else. At least now I am able to drive, the medication is helping., but it is not perfect. Some days it works better than others. Some days it’s like it’s not working at all. People I believe think I have found a cure all. But the sad fact is, no I have not. This is going to be something I deal with for the rest of my life. Yes, the medication makes it better, but I will still be disabled to some point for my entire life.  And this leads me to my 2^nd thought.

Have you heard about the girl with MS here in NC. That falls because she cannot feel her legs after she runs? I seen the story about her recently and it give me a lot of hope. If this young girl can run, and win competitions, then I can do the same thing! I just need to fight though the pain! Yes her conditions is different, she has MS and I have DRD. But the fact that she was able to run so hard, and so fast knowing that at the end she would fall, be scared because she can not feel her legs is a great inspiration to me.

Today I had that in mind. I felt horrible, I spent the usual 3 hours in bed wondering when my body pain would end. I finally got up and exercised, even did a little more than I should have with her in mind! Yes, I will pay for it, but it will be worth it! Each day I will get stronger!

Because of all the muscle contractions some of my muscle groups have not been used in so long they are actually weak. And I know some have shortened, especially in my neck. So I must do these work outs and get them back in shape!, yes I take it easy but at the same time, I want to just get better!

My doctors give me guidelines I know. But I know that I need to work hard on my body so that is what I am doing (slowly each day), even if I will never be completely normal. My minor in college was in Health and Wellness, so I am in the process of making my own unique at home routine, that will not put too much stress on my body, while at the same time I will get the most benefit out of it. I am going to start PT soon, but I have to wait until January to do it, because of financial reasons and because I was just newly diagnosed with DRD. PT routines are different depending on the condition.  I am taking in mind that I have to take it easy when I do my routines. I can not run any longer, but I do have a nice stationary bike that has lots of options that someone gave to me, and I use that for my cardiovascular fitness.

Well everyone, welcome to my typical boring day. I am in horrible pain each day. I probably could have went into more detail, but I think this covers part of it.

I always say God does not give you anything that you cannot handle. And apparently he thinks I am pretty strong! So here I am, just me, writing about this boring stuff huh.

I do have medication that works, but the dosing needs to be tweeked, my pain still needs to be under control, and I have to get my body in shape. I say body in shape because now the medication will enable me to get my whoel body in shape LOL. I remember when I ran 3 to 4 miles and my legs would be in such horrible pain! I would push through it! Not knowing I had a problem. I looked in shape LOL but ummmm I was Dystonic, so even if I did not work out I looked like I did Ha Ha.  I have always been thin, no matter what I did. And I remember when things got really bad the girls (my daughters) wanted to know how I was so toned withought doing anything LOL This is Dystonia my friend, my muscles want to be in a tense state at all times, all on their own! My muscles want to twist my spine, stiffen my gait, and make me fall.

But I WILL NOT let that happen! I will do what my doctors say, take my medication, and take this set back and use it in someway to give someone hope and make myself and others stronger! I may look like a robot with my stiffness on somedays! But I am not, I have feelings and emotions that surpass all of my understanding!

I hope everyone has a blessed week! And I will write again soon!

Merry Christmas!

Here is a Video of the Girl with MS that runs! It is so inspirational! She gives me hope to make it through my pain! to make a difference some how. And even at my age to follow my dreams!

Kayla Montgomery 

Diagnosis Day

December 8^th 2014 Diagnosis Day

I am not really even sure how to express my feelings of this day, I knew it was coming but I still had a lot of doubt in regards to my diagnosis. I believe that was because I have seen so many doctors in my life and they could never really explain what was going on with my body and what was causing my symptoms.  So how do I even begin! Well I suppose I should just start somewhere.

The night before I told myself I was not going to be nervous, then of course the nervousness of the upcoming appointment set in. Everyone that knows me knows that no matter what doctor it is I get nervous, but this was a big appointment! He may be able to tell me what is going on with my crazy body. What is he going to say? Is he going to tell me it is just stress related and the medication working so well is a placebo affect? I have so many questions for him! Do you think it is early onset Parkinson’s? Is it Dopa Responsive Dystonia for sure? What kind of damage has happened to my body over all these years of stiff muscle contractions? These are just a few of the questions that ran through my head. I could go on and on, but lets just say it was a bit hard to fall asleep.

I have been trying to figure this out for many years. But it was over the past few years that I knew for sure something was really wrong, because the symptoms got worse and now it affected my legs dramatically, worse than before. I can tell you just a few of my diagnoses. One was panic attack; they said that was what was causing me to become paralyzed at times, randomly even though I was not in any sort of stressful situation. I once woke up and could not move my left leg. My son called and ambulance for me. I was twitching all over my body and could not stop it. I get to the emergency room and for almost 6 hours I shook all over, twitched ect. They did not run a single test and told me it was a panic attack. WHAT? When the shaking finally stopped I could hardly walk and I was in severe pain all over my body. This was March 2013, My husband was on the road and the boys were with a neighbor. I remember them discharging me as I slowly walked, almost as if drunk to the front of Duke hospital emergency department. It was 6 am, cold and raining, and I was alone. I called a cab so I could get home and I cried while I waited. Here I was wondering what was going on with my body and they did nothing! 2 weeks earlier I was at that same emergency room because I had several paralyzing episodes in my upper body and I feared I was having a stroke. That is when they referred me to a neurologist that specialized in MS. The nurse practitioner at that time told me that it  sounded like MS. Ill save my first appointment story with that neurologist for another blog.

I had in the past had those shaking twitching all over my body spells before, once it lasted for 4 days. They said it was a possible kidney infection and low potassium and sent me on my way. Wow what a strange feeling when all your muscles do that. Amongst all the other strange symptoms I have had over the years.  That too will be for a different blog.

Ok long story short! I am starting to get off topic ha ha. So I arrive to my new neurologist’s office on what I am calling Diagnosis Day. I am taken back to his room. The nurse greets me with a smile ( she is always very kind). She says “So the medication is working!”, Yes. “Has anything changed in your file?”, No. “ I see that you are a microbiologist, I am sure you are happy to get back to work! “ my response… “I wish, but I lost my job.” Of course she was very nice and let me know my health comes first.

So the doctor comes in with a huge smile on his face, shakes my hand, as I explain I was nervous. Takes a seat, still smiling. And says “The medication works!!” I am not sure I have ever seen a doctor that happy to see me.  So he lets me know that the timeline of symptoms I prepared for him was great. On the first appointment he wanted me to make a timeline of all my symptoms and diagnosis’s I had in the past.

Then here comes the big moment, he asked me to walk. By the way he is still smiling big ha ha. So I begin my walk down his office hallway and I can hear him saying “WOW, look at how much more fluent you are! Keep going, Ok turn around!” Then he had me do it again, I then said look my but shakes now Ha Ha. I remember seeing the smile on his face was even bigger when I was walking toward him.

We go back into his office and I sit on the table. This is when he told me what it was. I did not have to ask any of the questions that I had thought about the night before.

His exact words were, ”Well my dear, you have been through a lot.” “And I am sure you are in a lot of pain.” He paused and looked at me with a hesitant half smile. “You have what I like to call Dopa Responsive Dystonia.” “And from your history, you may have had it since a child.” “You do not have parkinsons.” At that same time he was writing on a slip of paper. Got up and handed it to me, with my diagnosis written on it and his signature. He shook my hand and gave me a hug. He then sat back down and told me that now I can get back to my life, and have a life since we now know how to treat me.  He let me know my back problems and neck problems, even my 2 herniated disks that occurred in the past was due to my dystonia. And that now we needed to find the right dose for my symptoms. He went on to tell me I would need lots of physical therapy and that I have probably been walking incorrectly for so long that I have to go to PT to learn how to walk again. Now that part stumped me, and did shock me a little. He went on to say that from the constant contractions from my untreated dystonia that it what has caused all my pain and that there would be some damage, but PT and medications will help that! He said all of this with a smile and with the sound of lots of hope. I am finally going to get the help I need! Finally!

Now I know that I will probably always be in pain, due to all the joint damage throughout my body. But if we can keep it all under control and I go to PT I will get a little better. And that makes me feel good. I do hope I can get the pain under control better.

So long story short, I am not crazy! I am not a hypochondriac. I have been in pain.  I really had something.  I was not having panic attacks. Yes I am a little upset that no one ever listened. That I have lost so many friends because I was in too much pain or too exausted to do anything. But now I know what it is, and in time I can lead a more normal life with less pain! And not look like I am freaking out because I am shaking, and not being accused of being high strung because I am stiff. I will admit so many people would think I was upset because I would at times have a blank facial expression due to the low dopamine levels, and that with a stiff stressed out looking body, well I guess I cant be too upset cause I am sure I looked like a weird robot to them.

Ok so this is it for now. I will write in more details at some point about all the strange occurrences and symptoms. So my blog is going to go back and forth I suppose.

I have so much hope now. This is a genetic problem so I only hope I have not passed it on to my boys. But at least now if they have issues they can have it treated much sooner than I did.

Peace, love and blessings to everyone!

Here is the slip of paper...

My first post, just a little about me

So I have finally decided to start a blog. Yes I have named it Dystonia Dawn, but it is not going to be just about that, what am I crazy?

I am sure it is going to be boring to most people ha ha. But what if I reach just one person that has, or is going through the same thing as me? Well then it is all worth it to write about what I am going through or what I have went through.

So welcome to my mind and my world, welcome to me, Dystonia Dawn! Many people may read this and be like, OMG look at all these grammatical errors, does she know anything? Well, if you are one of those, let me first point out that I don’t care ha ha. If I did I would not be starting a blog or anything of the sort were I am expressing my thoughts.

I am a dynamic individual as every person is with many likes, dislikes and views, regardless of my disabilities. It is just that the Internet has enabled regular people like me to express them selves to the world. I suppose you just have to not care and be willing to except other people’s criticism when you do something like this so publically.

So more about me, I am a microbiologist/scientist (even if I am not able to work at the moment). I am a wife, a mother, a Christian, an artist, a photographer and a dreamer. But I am also someone who has been through a lot, seen a lot and now  who finally has a name for her medical condition, well at least for the main ones lol.

Ok lets be honest, I have Dopa-Responsive Dystonia, probably a mild case ( man I feel for those with the worse cases) and it is a struggle every single day and has been for many years. The pain is absolutely horrible, and I would not wish this on my worse enemy! But I don’t have just that, I will be honest I have PTSD (from a hard childhood ant etc). And both of these cause other problems which I may or may not talk about later, it all just depends on my mood on what I share with this world. And honestly most will probably not read any of this. But I am still going to write it.

So to those suffering, to those are wondering, know what you are going through, you are not alone. There is at lease one person who can relate and understand.

I send prayers and blessings to everyone! And I hope I actually write more than just this one post. I like to finish things when I start themJ