I posted this on Facebook last week and thought I would add it here as well.
Several people have asked me how I am doing, if I have any news on getting an appointment, etc. So, I thought I would put together a status update and just post it here. As a recap, back in September, I was hospitalized for 3 days due to losing strength on the left side of my body. I had actually been having some neurological problems leading up to that and was on my to a neurologist appointment when I lost strength and detoured to the emergency room at Dallas Medical City. That’s definitely leaving out a lot but I don’t want to bore you with the details.
Since then, I’ve been trying to keep a daily journal of all of my symptoms. Some days are definitely better than others. I still experience symptoms on a daily basis but nothing like I was in September or when I had a “flare up” a couple of weeks ago. I often experience the following symptoms:
- Concentration Issues – Trouble staying on task, particularly with background noise
- Dizziness
- Fatigue
- Hand Tremors
- Low Appetite
- Memory Loss – Forgetting conversations, forgetting words, forgetting tasks
- Nausea
- Pupils Two Different Sizes
- Shooting Pains in Hands and/or Feet
- Some Spasticity in my Arms and/or Legs
- Weight Loss
I’ve lost about 15-20 pounds since September since a lot of the time, I just do not feel like eating much. Either that or I get full very quickly. While losing weight isn’t necessarily a bad thing, it’s been a little fast and a little scary, I guess. Also, it’s easy to chalk up some of the symptoms to just being a mom with three little kids; however, these are all NEW symptoms for me and just suddenly appeared. I’ve had more than one doctor tell me that they think its all stress but I don’t see how that can explain all of my symptoms. I have grown weary of doctors writing my symptoms off as all stress-related. At 40, and particularly after going through infertility (tracking temps, symptoms, etc), I am very in tune with my body and this is NOT how MY body handles stress.
Many of you have asked if the doctors had tested for specific illnesses / diseases, so it might be helpful for me to list what I do NOT have:
- B12 Deficiency
- Cancer
- Carpal Tunnel
- Fibromyalgia
- Guillain-Barre Syndrome
- Lupus
- Lyme Disease
- Rheumatoid Arthritis
- Stroke
- Syphilis (don’t laugh, they tested me for it in the hospital)
I’m sure I left out a few but this is what I could think of off the top of my head.
I recently learned that I was accepted by the UT Southwestern Multiple Sclerosis Clinic. They sent me a large packet of paperwork to complete and fax back to them. Once they receive it, they will review and then schedule my first appointment. I do have a Neurologist that I am seeing; however, I’m not very happy with him. For multiple reasons, I guess. Number one, he chalked up my pupil issue as an eye infection but my eye infection is gone and my pupils are still two different sizes. Number two, he was convinced that I had carpal tunnel even though carpal tunnel couldn’t cause all of my issues. Number three, he attributes hyper-reflexes to a spine problem and since my MRI’s came back clear, he basically said that I shouldn’t have an issue. The hyper-reflex is almost ridiculously obvious during a physical exam. If the kids bump into my legs while I’m sitting, I almost kick them because of the reflex. Number four, he also told me that we may have to just say that we don’t know what’s wrong with me. I outright told him that I am absolutely NOT ok with that. I asked him why he doesn’t think its MS and he said that it’s because I do not have any lesions (http://en.wikipedia.org/wiki/Lesions). While that is true, I have not come across any documentation that says that absolutely 100% does not mean I do not have MS. Not to mention that all the MRI’s show is that I do not have any visible lesions right now – they cannot foretell what the results might be in the future.
My clinical symptoms all point to MS. I also have elevated protein levels (74) in my spinal fluid. I have identical oligoclonal bands (http://en.wikipedia.org/wiki/Oligoclonal_band) in my spinal fluid and my serum which typically indicates the presence of an immunological disorder. However, again it does not 100% rule out MS. Also, my spinal fluid results show a moderate impairment of my blood-brain barrier (http://en.wikipedia.org/wiki/Blood-brain_barrier). If nothing else, it bothers me that my current neurologist is not more interested in finding out what I DO have particularly since he said that he had never seen lumbar puncture results come back like mine. Where is Dr. House when you need him?
My mother recently told me that she is ok with me trying to find my birth parents particularly since I have so many medical issues and so few answers. I am not sure yet what I want to do. I would love to have the medical information and the ancestral information but at this time, I am not interested in having a relationship with my birth family. I have never felt that anything was missing in my life like that and to be honest, it seems like it could just add another element of stress to my life which is NOT what I need right now.
Some of you may remember that I had my mitochondrial DNA sequenced a couple of years ago. I was motivated by my curiosity in where I came from – like what countries my ancestors were from. I felt envious, for example, that Mike can tell the kids that he is German. All I can tell them is “I don’t know”. Without getting too deep into the whole genome sequencing and all that it entails, I found out that my maternal line is in the J Haplogroup (http://en.wikipedia.org/wiki/Haplogroup_J_(mtDNA)). I belong to a Yahoo group for this J Haplogroup and they were having a discussion this weekend about Leber’s Hereditary Optic Neuropathy. Basically it is a genetic condition that is passed in the mitochondrial DNA and it is also most common in the J Haplogroup. I used the miracle that is Google and was reading up on it when I saw that it is commonly associated with MS. One thing led to another and I had an idea about googling mitochondrial mutations and MS. I happened to find a research study conducted by an MS specific non-profit group. In this study, using a control group, they identified common genetic mutations among a majority of MS patients. While having these mutations does not guarantee MS, it does greatly increase the likelihood of developing MS. I have two of the three possible mutations mentioned in the study. Another interesting fact, the doctor that I am supposed to see at UT Southwestern is on the Scientific Advisory Committee of this group. I never dreamed when I had my DNA tested that it would do anything more for me than tell me where I came from.
I apologize for rambling. If you know me, you know that much of that is my personality. Some of it is my concentration issues and easily getting off focus though. My current status is that I am almost done with the UT Southwestern paperwork. I will fax it back to them and hopefully hear soon regarding final confirmation that I am accepted as a patient and when I will be seen.
I appreciate all of your thoughts and prayers so much. There are days that are really good and days that are really bad – emotionally and physically. I think the thing that I am struggling with most at times is that it is hard to come to terms with something when you don’t know what that something is. Without a diagnosis, there is no medication that I can be given to slow the progression of whatever I have. When I was trying to tell Mike about the genetic mutation information, I was shocked enough by it that I was having a lot of trouble formulating the words to convey it to him. What I mean by that, is that I have noticed when I am stressed, surprised, caught off guard, etc, it is even harder for me to focus and concentrate. That scares me. If for nothing else than how can I communicate what I need to Mike, a doctor, whoever, if I cannot concentrate enough to get my thoughts out? The thought of it potentially getting worse really scares me. I just hope that I can get a diagnosis for WHATEVER I have so that perhaps I can slow the progression of whatever it might be.
Facebook is probably the easiest for me since I can get information out to a large group of people in one shot. If you don’t see an update, please don’t think that it’s because I have left you out – it’s more likely that I am overwhelmed and am trying to get to it, or that I don’t have anything to update. But, I will do my best to keep everyone updated.
Wednesday, February 2, 2011
Wednesday, January 12, 2011
Perseverance
I decided to change the title of the blog today from "The Gehlbach Family" to "Perseverance". Websters defines perseverance as the continued effort to do or achieve something despite difficulties, failure, or opposition.
I guess it just feels like that's what we've been doing for the last year or so - persevering. In a way, I feel torn because perhaps I should select somewhat more uplifting. But, it just feels right for now so "Perseverance" it is.
I guess it just feels like that's what we've been doing for the last year or so - persevering. In a way, I feel torn because perhaps I should select somewhat more uplifting. But, it just feels right for now so "Perseverance" it is.
Sunday, January 9, 2011
Daddy
As I said in a previous post, where do I even start to relate all that has changed since I've blogged last? The biggest change without a doubt is the fact that Daddy died on May 7, 2010. He was diagnosed with primary liver cancer in November 2010, went through a couple of rounds of chemo by embolizing his portal vein, attempted a liver resection, found a new tumor on the healthy side and spent 8 weeks in hospice - all in 6 months time. I have several posts I made on Facebook at the time that I haven't re-read in quite a while. Not sure how much I want to read right now but I will share my original FB post.
I have so many thoughts going through my mind. So many things that I want to say to him. Replaying events of the past few months. I am not ready to let him go. I don't want this to be it. I am too young, my kids are too young. He is too young.
It is Thursday, March 11th at 2am. I am sitting at my father's side watching him sleep. Watching his blood pressure, his blood oxygen stats. He is sleeping fitfully but he is finally sleeping.
Mother is trying to sleep but I know she's not sleeping well. I worry about how I am going to tell Reed. What will I say when he asks where Papa is? I am heartbroken over this. He think that Nana and Papa are a unit. And they are. It is never just Nana or just Papa. It's one word - NanaAndPapa. How does a 3 year old process this?
We finally talked tonight about how he doesn't have much time left. We talked about the funeral, about where he wants to be buried. Unfortunately there are no plots available near my brother and sister. He wants How Great Thou Art sung at the funeral. He talked to Mike about finances. He doesn't want to leave Mother to have to mess with everything.
On August 20th, they will have been married for 50 years. I have been thinking about how we could celebrate for the last several years. I wanted so badly for them to have this anniversary. My heart is broken for my mother. How does she go home to an empty house, an empty bed?
I have no doubts whatsoever about where Daddy will spend eternity. I know that he will have no suffering. That he will be reunited with Jennifer and Chris, my brother and sister. I know that lifeis finite and that death will come regardless. I just don't want to let him go. I want my kids to grow up with him. I want Mother to have him around. I want to have him around.
I know that I could spend the rest of my life with "what-if's" but it is hard not to wish that we hadn't attempted the liver resection. Just three weeks ago, the CT scan showed that the left side of his liver had grown enough to remove the tumor on the right. We never imagined that the surgeon would find another tumor. A tumor the size of a half-dollar that wasn't there just 3 weeks ago. The surgeon thinks that the anesthesia from attempting the surgery was just too much for his body. His blood pressure dropped too low and his kidneys started to fail. I think about if we had just tried to make him comfortable, gotten him a morphine pump, etc. He could have been happier his last few months instead of miserable.
He has gained 20 pounds in the last two days. It looks like it is all in his legs. They are so swollen. He had lost about 50 pounds since November when this started. His shoulders are so thin. The skin hangs off his arms and face. I have never seen my father like this. He is having anxiety attacks and wants Mother or me to be close by. I am struck by the irony that I comforted him with the same shh'ing that comforts my babies.
Mother was torn with telling him how bad it is. I was selfish. I didn't want him to slip away in a coma without me being able to say goodbye. I want him to be able to tell us that he loves us.
I have never watched someone die. Chris was in a car wreck and I never got to say goodbye. Jennifer was in a coma for two weeks but since I was only 7, I wasn't allowed into the ICU. I never got to say goodbye to her either. I desperately want to be able to say goodbye to Daddy.
Daddy and I have butted heads so many times. We are both stubborn. He is very rational while I am emotional. I know there were so many times where I frustrated him. But I love him. He is my Daddy.
When I was little, Daddy took a Dale Carnegie class. Each person had to give a presentation to the group. Daddy's presentation was about me and how he and Mother adopted me. There were grown men that cried. I remember when Jennifer died, I saw him cry for the first time. I will never forget how it felt like the world was ending to see him cry.
I remember driving cross country on one of our several moves. Listening to a Conway Twitty or Buddy Holly 8-track. I got so tired of those songs. He worked so hard and always took care of his family. Regardless of where we moved, we were still together.
He has a strong faith. A quiet faith that isn't in your face but he will also gladly share. He has been active in church my whole life. I remember going up to the Family Life Center at FBC Little Rock with him and learning how to shoot pool with he and the other deacons. He worked with the Homebound then and continued until just a fewmonths ago. He and Mother did Meals on Wheels just a couple of months ago. He was more than willing to help anyone who needed it.
I can't believe that I'm going to have to let him go.
I have so many thoughts going through my mind. So many things that I want to say to him. Replaying events of the past few months. I am not ready to let him go. I don't want this to be it. I am too young, my kids are too young. He is too young.
It is Thursday, March 11th at 2am. I am sitting at my father's side watching him sleep. Watching his blood pressure, his blood oxygen stats. He is sleeping fitfully but he is finally sleeping.
Mother is trying to sleep but I know she's not sleeping well. I worry about how I am going to tell Reed. What will I say when he asks where Papa is? I am heartbroken over this. He think that Nana and Papa are a unit. And they are. It is never just Nana or just Papa. It's one word - NanaAndPapa. How does a 3 year old process this?
We finally talked tonight about how he doesn't have much time left. We talked about the funeral, about where he wants to be buried. Unfortunately there are no plots available near my brother and sister. He wants How Great Thou Art sung at the funeral. He talked to Mike about finances. He doesn't want to leave Mother to have to mess with everything.
On August 20th, they will have been married for 50 years. I have been thinking about how we could celebrate for the last several years. I wanted so badly for them to have this anniversary. My heart is broken for my mother. How does she go home to an empty house, an empty bed?
I have no doubts whatsoever about where Daddy will spend eternity. I know that he will have no suffering. That he will be reunited with Jennifer and Chris, my brother and sister. I know that lifeis finite and that death will come regardless. I just don't want to let him go. I want my kids to grow up with him. I want Mother to have him around. I want to have him around.
I know that I could spend the rest of my life with "what-if's" but it is hard not to wish that we hadn't attempted the liver resection. Just three weeks ago, the CT scan showed that the left side of his liver had grown enough to remove the tumor on the right. We never imagined that the surgeon would find another tumor. A tumor the size of a half-dollar that wasn't there just 3 weeks ago. The surgeon thinks that the anesthesia from attempting the surgery was just too much for his body. His blood pressure dropped too low and his kidneys started to fail. I think about if we had just tried to make him comfortable, gotten him a morphine pump, etc. He could have been happier his last few months instead of miserable.
He has gained 20 pounds in the last two days. It looks like it is all in his legs. They are so swollen. He had lost about 50 pounds since November when this started. His shoulders are so thin. The skin hangs off his arms and face. I have never seen my father like this. He is having anxiety attacks and wants Mother or me to be close by. I am struck by the irony that I comforted him with the same shh'ing that comforts my babies.
Mother was torn with telling him how bad it is. I was selfish. I didn't want him to slip away in a coma without me being able to say goodbye. I want him to be able to tell us that he loves us.
I have never watched someone die. Chris was in a car wreck and I never got to say goodbye. Jennifer was in a coma for two weeks but since I was only 7, I wasn't allowed into the ICU. I never got to say goodbye to her either. I desperately want to be able to say goodbye to Daddy.
Daddy and I have butted heads so many times. We are both stubborn. He is very rational while I am emotional. I know there were so many times where I frustrated him. But I love him. He is my Daddy.
When I was little, Daddy took a Dale Carnegie class. Each person had to give a presentation to the group. Daddy's presentation was about me and how he and Mother adopted me. There were grown men that cried. I remember when Jennifer died, I saw him cry for the first time. I will never forget how it felt like the world was ending to see him cry.
I remember driving cross country on one of our several moves. Listening to a Conway Twitty or Buddy Holly 8-track. I got so tired of those songs. He worked so hard and always took care of his family. Regardless of where we moved, we were still together.
He has a strong faith. A quiet faith that isn't in your face but he will also gladly share. He has been active in church my whole life. I remember going up to the Family Life Center at FBC Little Rock with him and learning how to shoot pool with he and the other deacons. He worked with the Homebound then and continued until just a fewmonths ago. He and Mother did Meals on Wheels just a couple of months ago. He was more than willing to help anyone who needed it.
I can't believe that I'm going to have to let him go.
Turning 40
I posted this on Facebook back in March 2010...
For whatever reason, turning 40 has been a little harder for me than I would have hoped. Turning 30 was nothing but turning 40 just felt, well not old but definitely getting there. I know that I look older. I have a lot more gray hairs, lines around my eyes, etc. There are days where I feel every day of those 40 years! I guess I've just been thinking a lot about how different my life was 10 years ago from now.
Ten years ago, my life was focused on work and planning our wedding. Mike and I had gotten engaged 3 months earlier. I was also traveling a lot for work.
Even in March 2000, I remember feeling like I was still recovering from all the effort we put into Y2K. We had worked for months on the Y2K Project. I worked all night on December 31, 1999. Party like it’s 1999? Uh, not really! We did have one “red” issue that was a Y2K related event – a drunk driver ran took out a transformer so Florham Park lost power. That was our big event for the night.
Work was really my life. I think back and it completely defined me. My ups and my downs, my self esteem was completely tied to it.
Oh, the clothes! I spent way more than I should have on clothes but I had some really nice things. When I met Mike, I think I had like 70+ pairs of shoes. I had some gorgeous heels and work shoes. I got my hair cut every 6 weeks. Got my brows waxed regularly. Thought nothing of dropping a fortune on makeup. The list goes on. I wish I had a 10th of the money that I wasted. Sigh…
Now, my life is focused on my kids. I haven’t “worked outside the home” in almost 4.5 years. I spend my days cleaning up after meal times, changing diapers, doing laundry, etc. In many ways, no job was ever this challenging. No job has ever pushed me to these limits. But no job was ever this gratifying either. The little smiles, the milestones, the “I love you, Mommy” or “I missed you, Mommy” from Reed. No offense, but no praise from a Senior Exec ever felt near as good as one little smile.
I weigh lless than I did 10 years ago. Well, after losing 90+ pounds! My body definitely doesn’t look the same even though I’ve lost weight. Everything has moved around some and my tummy will never be the same. I have just started doing Pilates on my own though to see if that helps. I think I’m already seeing some results, so that is very encouraging!
I definitely eat healthier than I did 10 years ago. I also go to bed a lot earlier than I did 10 years ago! I have less time to get things done but I accomplish more. I think back and wonder what I did with all the spare time that I had.
Sometimes I wish I could have some of the alone time that I had then. Not have little hands grabbing at me (I think Everything Counts by Depeche Mode is the kids’ theme song!) constantly. But I remember how empty inside that I felt at times. How I felt at times that despite all of my efforts, I wasn’t really making a difference in my job. I am definitely needed now! I never imagined just how much I could love someone until Reed was born. I never imagined just how much I could love THREE someone’s until Caroline and Culp were born! I don’t think that there is anything that any one of them could do to make me stop loving them.
Am I exhausted at times? Absolutely. Frustrated? Yep. Feel like everything is resting on my shoulders? Definitely. But, I wouldn’t change a single thing if it meant not having my babies. They mean the world to me.
So, I guess that overall my life is so much better than it was 10 years ago. So much richer. I have grown a lot as an individual and I hope that I grow and mature as a mother each day. Here’s to the next 10 years! Watch out 50! ;)
For whatever reason, turning 40 has been a little harder for me than I would have hoped. Turning 30 was nothing but turning 40 just felt, well not old but definitely getting there. I know that I look older. I have a lot more gray hairs, lines around my eyes, etc. There are days where I feel every day of those 40 years! I guess I've just been thinking a lot about how different my life was 10 years ago from now.
Ten years ago, my life was focused on work and planning our wedding. Mike and I had gotten engaged 3 months earlier. I was also traveling a lot for work.
Even in March 2000, I remember feeling like I was still recovering from all the effort we put into Y2K. We had worked for months on the Y2K Project. I worked all night on December 31, 1999. Party like it’s 1999? Uh, not really! We did have one “red” issue that was a Y2K related event – a drunk driver ran took out a transformer so Florham Park lost power. That was our big event for the night.
Work was really my life. I think back and it completely defined me. My ups and my downs, my self esteem was completely tied to it.
Oh, the clothes! I spent way more than I should have on clothes but I had some really nice things. When I met Mike, I think I had like 70+ pairs of shoes. I had some gorgeous heels and work shoes. I got my hair cut every 6 weeks. Got my brows waxed regularly. Thought nothing of dropping a fortune on makeup. The list goes on. I wish I had a 10th of the money that I wasted. Sigh…
Now, my life is focused on my kids. I haven’t “worked outside the home” in almost 4.5 years. I spend my days cleaning up after meal times, changing diapers, doing laundry, etc. In many ways, no job was ever this challenging. No job has ever pushed me to these limits. But no job was ever this gratifying either. The little smiles, the milestones, the “I love you, Mommy” or “I missed you, Mommy” from Reed. No offense, but no praise from a Senior Exec ever felt near as good as one little smile.
I weigh lless than I did 10 years ago. Well, after losing 90+ pounds! My body definitely doesn’t look the same even though I’ve lost weight. Everything has moved around some and my tummy will never be the same. I have just started doing Pilates on my own though to see if that helps. I think I’m already seeing some results, so that is very encouraging!
I definitely eat healthier than I did 10 years ago. I also go to bed a lot earlier than I did 10 years ago! I have less time to get things done but I accomplish more. I think back and wonder what I did with all the spare time that I had.
Sometimes I wish I could have some of the alone time that I had then. Not have little hands grabbing at me (I think Everything Counts by Depeche Mode is the kids’ theme song!) constantly. But I remember how empty inside that I felt at times. How I felt at times that despite all of my efforts, I wasn’t really making a difference in my job. I am definitely needed now! I never imagined just how much I could love someone until Reed was born. I never imagined just how much I could love THREE someone’s until Caroline and Culp were born! I don’t think that there is anything that any one of them could do to make me stop loving them.
Am I exhausted at times? Absolutely. Frustrated? Yep. Feel like everything is resting on my shoulders? Definitely. But, I wouldn’t change a single thing if it meant not having my babies. They mean the world to me.
So, I guess that overall my life is so much better than it was 10 years ago. So much richer. I have grown a lot as an individual and I hope that I grow and mature as a mother each day. Here’s to the next 10 years! Watch out 50! ;)
Fell Off the Face of the Earth
Good Lord, it's been over a year and a half since I've written a blog post. No, I didn't fall off the face of the Earth. I guess life just got in the way.
Where do I even start?
Where do I even start?
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