Hello. My name is Shannon and I have bipolar. Sometimes known as manic depression. My oldest daughter, Brianna, that is 7 also has this illness. I am making this page to explain this to people that know me and some that don't so they can understand me better and this thing that I am cursed with. What a word. Cursed. It is a curse. I would not want to wish this on anyone. It is a hard thing to live with at any age. I know that it is hard on me and I cannot even begin to imagine what my daughter goes through as I was never as severe as she.
I was diagnosed with Bipolar and Obsessive Compulsive Disorder in January of 2001 while living in Hawaii. I had been having a very hard time living there. I hated it and was miserable. I had gotten to the point that I was crying all the time and could barely get out of the bed. I had been diagnosed as a child with what is now called ADHD. I now believe that I have been bipolar all my life. There is a strong history of mental illness in my family on both sides of my family, including bipolar.
My daughter was diagnosed ADHD and ODD (Oppositional Defiant Disorder... essentially a teenager in a little kids body) in Hawaii as well). When we came back to Virginia her diagnosis was changed from that to ADHD and bipolar. There was just no doubt any more. She also experiences psychotic episodes when not medicated properly.
The medications that we take are plenty. Our house is like a pharmacy. We each take 4 to 5 medications each a day just to get by. This is our life and we live it. For now Brie does'nt usually question it. At times she doesnt want to take her meds but that is usually more out of defiance than anything. She pops pills like a drug addict. It blows my mind to see her put 4 pills in her mouth and swallow them down with a small sip of water. 7 years old and a seasoned pill taker. What a life I have given to my daughter. I try to deal with this but it is hard. We genetically give our children so many things. I wish so much that I had given her my green eyes rather than this nasty thing in her mind.
First I will list some things about early onset bipolar taken from the site bipolarchild.com. Early-onset bipolar disorder is manic-depression that appears early--very early--in life. For many years it was assumed that children could not suffer the mood swings of mania or depression, but researchers are now reporting that bipolar disorder (or early temperamental features of it) can occur in very young children, and that it is much more common that previously thought.
We have interviewed many parents who report that their children seemed different from birth, or that they noticed that something was wrong as early as 18 months. Their babies were often extremely difficult to settle, rarely slept, experienced separation anxiety, and seemed overly responsive to sensory stimulation.
In early childhood, the youngster may appear hyperactive, inattentive, fidgety, easily frustrated and prone to terrible temper tantrums (especially if the word "no" appears in the parental vocabulary). These explosions can go on for prolonged periods of time and the child can become quite aggressive or even violent. (Rarely does the child show this side to the outside world).
A child with bipolar disorder may be bossy, overbearing, extremely oppositional, and have difficulty making transitions. His or her mood can veer from morbid and hopeless to silly, giddy and goofy within very short periods of time. Some children experience social phobia, while others are extremely charismatic and and risk-taking.
Adults with bipolar are basically similar to children though they tend to have less severity in their symptoms. Some children can "outgrow" early onset bipolar. Brie's therapist and pyschiatrist don't believe that will be the case with her. She is a inherited bp which means that more likely it will follow her through out her life, as mine has. When I first saw my med dr here; he asked me if I was prepared to take my meds for the entirety of my life. If it had not sunk in before then it definitely did that day.
This is something that I wrote to a bipolar email list that I am on. It explains a lot about me and how I am and what I go through.
Maybe it will best sum me up in a way. Here I guess I can give a brief bit of my story. I am Shannon, a 27 year old stay at hom mom to two girls. I am married and my husband is in the Navy. My girls are 7 and 4. I was diagnosed bipolar and OCD in January of 2001 though I had a misdiagnosis in my child hood of whatever they called ADHD at the time. I believe Ive been this way all my life. But that isnt really the issue here. I have passed this on to my daughter. My oldest. She is much worse off than I. Shes Bipolar.. with psychotic episodes. She has already missed half of her first grade year and will be repeating it next year. She has been hospitalized when I have not ever been. And yes before you ask I find myself feeling guilty and yes I know that I cannot help my genes but can we help our feelings of guilt any more than we can help our genes?
Because of this Brie and I are constantly clashing. We are too much alike. I wonder what it will be like in our house when she begins to reach womanhood though I really dont want to go down that road til I have to. How on earth do I have a 7 year old that acts about 15?
I have a wonderful husband. Hes most understanding of me as much as anyone can be. But even he cant understand this? Who can? I dont know. There are times that it gets to him. I know that I cant imagine living with me and mini me (brie). There are times when I want him to go go go and when hes does I want him to come back come back come back. I have this huge fear of being alone. I dont know if its just him or its me. We got married when Brie was six months old. Not sure if it was because of us or because of her. We never really got to know us before there were to be 3 of us. She was an oops baby. We have defied the odds and stayed together much longer than most like us. I was in the Navy when we met. There were three couples. *two of my friends and I * We all had babies with in months of each other. We are the only ones left together.
I have wonderful friends. Funny thing is most of them are on the computer. I usually cannot bare to go outside. I dont live a "normal life" as most would say. I do not like crowded places. I dont like people and when I on a bad day I dont even want to walk out my door. I think I am rather agoraphobic but that is neither here nor there. I can make wonderful friendships with people that I do not meet but I cannot bare to meet new people. I always feel as if I am under a microscope and being judged by anyone that is looking and even those that arent. I do not like this feeling. My therapist tells me ... get past it. I dont find it to be that easy to get control over this monster in my head.
Well, this past three weeks has been interesting. My husband has reoccurring kidney stones. Hes had surgery several times and this was his 4th procedure. I have had an ear infection (inner and outer, if it matters) on and off since April. I have not been myself for a while. I have been dragging myself and my youngest back and forth to his doctors appointments til they could decide what to do with them this time. My oldest is in a summer school program. Well during this time my meds ran out. I try to be superwoman and do all. I have never put myself first and dont believe I ever will. My self worth value is lower than what I feel for my toilet but I dont think that will ever change either. Negative thinking, maybe. But 27 years worth is a bit hard to break. I get by... So I put off my meds to take care of everyone. Ill be ok. Its only a day or two. NEVER AGAIN. I found out just how sick I am. Have you ever felt like you wanted to rip your skin off and climb out of your body? Or bang your head against the wall until the whirling all stopped? I cant think of a way to explain this for a layperson to understand. I tried to tell my husband this and just looked at me funny. How do you say I was losing my mind and would have done anything at all to get it out out out .... I have never been so out of it and scared in my entire life. I spent most of those days in my bath tub to stay away from everyone in the house. I didnt want to be around myself so why would anyone else. That was my thoughts. So I went out after 3 days of this and picked up my meds. My moods are returning back to some semblance of normalcy.
The one thing that crosses my mind in hindsight is how do these people that say mental illness is in our "heads" and not real think that? I wish that they could live just 10 minutes as I spent those 3 days in utter hell and chaos.
I really do not know why I typed all this out to send. Maybe a catharsis so to speak. More for my benefit than anyone elses. maybe to see that I am not alone in this.
I dont look forward to the teenage years but for now we take it one step at a time. Each day is a battle against the illness, against me, against Brie. It's a long road uphill both ways. I cannot imagine it getting any worse so it can only get better. In the days, weeks and months from now I will continue to add to this page as there is much more I can say here but for now I will stop.
September 27, 2002
Today is really just another day. I did have to schedule another appointment with my therapist. An emergency appointment. I am having a bit of a rough spot. I feel like I am in an emotional upheaval. Brianna is having a really rough time right now. I don't know if its starting back to school full time, a full moon, a change in her cycling patterns, or just her but shes really seeming to escalate lately. She has been exhibiting hyper sexuality. She stripped her shirt off on the school bus and then talked back to the bus driver when they told her to put it back on. She told us that a little boy at school "touched her" and got into trouble. We later found this to be untrue. She isnt even ever around a little boy. The class she is in only has 8 kids and 3 teachers and she sits by one of them and a little girl. The only boy she is ever around is 5 and she "flirts" with him and never has an occasion to be alone with him or any time for this to occur. This is only one time that she has "lied" about something like this. The first time being in the hospital in February when she told them that her father did this and that I watched. Being a survivor of child molestation by my own father; I was totally blown away by this one. Child protective services did a total check of this and found it to be untrue. Brianna's own therapist was shocked and said and they believed her?? How can a seven year old think of these things??? Sometimes it hurts me so badly. What if something like this ever really happens? I just really don't know what to do sometimes. I feel as if I am banging my head into a brick wall. I cannot even begin to imagine what it is like in her head. And sometimes it is hard to remember that. I try so hard.
I talked to my husband last night. A long talk. We talked about things that have been going on here and how I have been feeling. Emotions that I have been feeling about his treatment of me. How I dont feel that he is very supportive. I need his total support and lately I am not getting any. At least this is how I am feeling. I feel like he is working against me and I cannot do this alone. Or even with 50%. It just isnt working. When we met and barely had time alone before getting pregnant with Brie it wasnt the best circumstances at best. We have made it because we are friends. I told him that I am not in love with him. I saw the hurt in his eyes. I don't know if I even know how to love someone that way. Is it even possible? I cannot even love me so how can I begin to love anyone else? I am such a wreck.
I had my first panic attack in public the other day in my med doctors office. My therapist was there and kept telling me to breath. They were running behind. There was a lady behind me turning the pages of a magazine and it sounded SO LOUD I just wanted to rip it from her hands. I turned around and I know I had to given her a look from HELL. It was just driving me mad. I did not feel well at all. I finally just took off out of the room. I slammed the door on my way out and I know I had to jar their teeth. When my dr finally came out to get me he was majorly apologetic. Explained that there had been a car accident earlier in the day and it backed the whole day up. I usually dont do well in public but they have made the lobby there bigger and I usually do ok there for the short time that I have to wait. But that hour felt like the longest in my life. The sounds were so amplified and I just wanted out of there so badly.
Now I went to the ENT for my ear problems. They finally cleared up my outer ear infection after 6 months. So the dr could see my ear drum (right side). There is a polyp under my drum. So there is something going on back there. So now I am on steroids for a week. Drop steroids until I go in for a CT scan. Both my ear drums are refracting. She said either I have an immense build up of fluid back there which means they will have to go in and drain the fluid and put in tubes or I have cysts or tumors back there. Either way I'll more than likely have to have surgery which is one more worry on my mind right now. I just feel bogged down.
I really havent had much time on the computer lately so there went that support system. I think that hasn't helped a lot. Garrett (hubby) says that I should be able to talk to him but when I feel that he is a BIG part of the problem it was really hard to go to him. I don't know. It's just so much easier to talk to people that aren't here in person to gage my facial expressions and see my emotions. I am not too good with that. It has taken my a year and half to totally open myself up with Douglas (my therapist, a woman by the way) to the point that I feel comfortable with her to say anything. That to me is a huge step. I am actually shocked that it took me that long because I am usually a very open person and I did hold back. But I haven't been in therapy since I was a very young girl. And back then they just said I had a very vivid imagination. So maybe that has to do with it. I don't remember it. I do not remember anything before my 11th birthday aside from sketchy little blotches.
I guess that is really all that I have to add today because I have basically written a book but I feel much better after getting a lot of this written out. This is the way I get rid of stress and I think it's really good for me.
October 13, 2001
So much has happened since I wrote last. I cannot even begin to think where to start. Brie is escalating so badly. It is breaking my heart. I just do not even know what to do or what to even think. No normal person can even begin to imagine what this is like. I cannot even imagine what it is like. I keep going to sleep and wake up in the morning thinking it was all just a bad dream. She is getting so abusive to her sister. She chopped her hair off, hits her repeatedly, tells her she hates her, cusses her out, threatens her on a daily basis, and is just downright cruel. It kills me to see and Moe just forgives her as if its nothing. I just have a feeling one day McKaela will defend herself and never want to forgive her sister but who knows what the future will bring.
Her doctors and I want to seek a residential treatment for her. But apparently its very complex to get them in. I guess that will be the next step. Dr Speigel now thinks that Brianna is schizophrenic. I'm still in shock about that one I think because I haven't really thought about it alot. I talked with Garrett about it and he doesnt seem to really pay attention to that part of it. I really dont think he understands ... But who does?
Today he had a "long talk" with Brie about her hitting her sister. I wish that he understood that it goes in one ear and out the other and she probably doesnt even listen or really comprehend what he is telling her. After that he had her spend all day in her room. He decided that his course of action is to ignore her. Though in his talk with her he told her that the drs and I want to send her to the hospital and he doesnt. That bothers me. It makes me feel like he is telling her that he isnt supporting our decisions. I just dont feel like Im getting the support that I need. Especially when the drs are backing this and he isnt. What is wrong with this picture????
Shes stealing from us. Money, personal items. Anything that she can find she takes. She even smuggled the scissors that she cut Moe's hair with out of the school. I keep all the scissors way away from her because of the incident in school last year. She had to have had them on her person because I check her backpack first thing when she gets home. How can a 7 year old be that cunning and manipulative? It scares me and blows my mind.
Today when she was suppose to upstairs "reflecting" and cleaning her room that has been trashed to high heavens she took a crayon and wrote NO NO NO all over my hallway and everywhere upstairs... Im just losing it. I do not know how much more of this that I can bear. She also had another bucket in her room stashed with pee in it. She had it hidden behind some stuffed animals so I couldnt find it unless I went in and really looked. I finally went in there tonight and took every single thing out of her room except her bed, sheet, pillow, and a blanket. I just sat here and cried at the computer. And then I feel so alone in this. Like I am the only one that understands. I just cannot do this .. I feel overwhelmed. Like if just one more thing happens I am going to break into a zillion pieces.
You know how they say God wont give you more than you can handle? Well, I am beginning to wonder who said that? Because I am only one person and even a sane normal person couldnt handle this ... hell that I live each day. I cannot imagine the things that go through Bries mind. My neighbor told me that she was talking about the vampires again the other day. I really hope shes not hallucinating again. I just really dont know what to do and neither does her medical team. They have upped her meds now and shes on such high doses for a few days it knocked her out but Dr Speigel said it was better than the alternative but as we all knew once her metablism kicked in she would be back to true form and she has been. Im just so scared for all of us.
October 29, 2002
Things have gone around the bend so much since my last posting. Brianna had a dystonic reaction to a new mood stabilizer that we tried her on called Geodon. It was a trial that we wanted her on so we could see if there could be any change since there had been little with her being so dosed up on everything else. Now she is on only adderal (for ADHD) and clonodine (to help her to sleep at night)I spoke to him yesterday and hes going to trial her on another medication, Zyprexa. He thought she had tried it in the past. This medication will treat both bipolar and schizophrenia/ psychotic behaviors, so heres hoping that this will do the trick. It has a very low occurence of side effects but so did Geodon. Geodon is less tested in young children though and they had another children have the same reaction. The last four nights have been hell. Shes hallucinating again. Night terrors as well. I dont know how much more either of us can take. Its gotten to the point that Moe is starting to be very scared at night as well. She claims to be seeing things. I think it could be just a reaction to her sisters actions. Im really hoping so. We saw signs much earlier in Brie and the only thing that I am seeing in McKaela is hyperactivity. Straight forward too. No other signs at all. Dr Speigel put her on clonodine as well so she can sleep at night. It has made her a lot less moody in the morning and she is the same happy child. For that we are greatful.
Dystonic reaction... That was the scariest day of my life. I cannot begin to imagine what that was like. Brianna looked as if she had a stroke or a massive seizure. The right side of her body was totally unresponsive. She was nearly catatonic and the only way that she could respond was by lifting her head to the air. This because her head was drooped over to the right side. It does look much worse than it is. It is treatable with benadryl. Funny though it took FIVE days of benadryl treatment to get two little pills out of her system. I am just thankful that it is over and would never want to go through that again. Another thing to add to my long list of feelings of guilt.
Things at home are fair. I am getting things done. I get manic periods when I want to go go go. But I am having a really hard time lately in public. I have had panic attacks at my doctors office twice. I dont know if its the stress getting me down or Im just in that phase. I never do well in public but this seems to be an extreme time for me because I can usually handle the things that I must do out of necessity. Usually at the last minute. But I do get them done. I tend to shop at night when everyone else is gone. It helps a lot.
I dont really know what else to add right now. I thought that I had so much to say but now that I sit here writing there really isnt much. I touched on what I wanted to. So for now. Thats it ~~
November 20, 2002
I cannot believe a month has passed since I last posted something here. I usually have been so faithful writing and so much has happened really that I probably should have been writing to get some things off my chest so to speak.
Brie started the Zyprexa and shes back on Clonodine. We have a few good days now and again. Its a start. Today of course is not one of the good ones. But that is understandable. She didnt even have a good day at school :( Sometimes I dont even know what goes through that little girls head. On a good note though. She passed her first 9 weeks :)She got Ds and Cs. I know. Of course to some of you that doesnt sound good but considering last year she failed. This is amazing. This girl is really pulling out the stops. She struggles so much with work and it just breaks my heart sometimes. Its hard for me to comprehend too because school came really easily for me for the most part. So I really wanted to share this. Its a big deal. Just the fact that she is passing and not failing anything at all. :) We tag team a lot with her homework which seems to take a lot of the stress off of either one of us too much at one time. That helps a lot.
McKaela seems to be having something going on. Now that shes riding a bus to school I dont have the same contact with her teachers so I may call up there one day and speak to them because she keeps getting upset faces from them with no real explanation as to why. I hope that shes not acting out. I dont know whats going on there. But she had been out of clonodine so wasnt sleeping really well. Could be that. They are both back on it and sleeping okay again. Aside from the night terrors. We now sleep downstairs. Brie, Moe, and me during the week. On the weekends, Garrett and one of the girls sleeps down here and I sleep upstairs with one of them. I am not sure what to do about this. Will be something to talk with Dr Speigel about on Monday at their appointment.
Me. Gosh, Do you have a decade? Since my last update we found out I have a cyst behind my ear drum. They put in tubes in both ears. I have marked hearing loss on both sides. Hence the ear infection on the right side. So they are going in on Dec 12 to do surgery. It is reconstructive surgery to clean out and resort everything that was messed up by the cyst is how it was explained to me. Now I am getting over the flu which has just made things oh so fun around here. Finally starting to feel a bit better. But while I was going through that I was sooo bad off that I missed some of my medication doses. So I kind of lost my mind so to speak. One day I was feeling pretty worthless and wasnt myself at all and was feeling so tired and just wanted to sleep so I got a bottle of my trazadone and was going to take them all. Thankfully Garrett stopped me. Sometimes I scare myself and I do not even have any idea what is going on in my head? Maybe everyone is right and I am crazy? I dont know. I have an appointment on Friday with my med doctor and will be talking to him about all of this. I think it had a lot to do with missing dosages and being sick and a little out of wack that way.
Things at home are going ok. Garretts just working a LOT. That makes things a bit strained but hes helping me a good bit. We are working together as a team with the kids and it makes things easier for me. Hes going to have to take on a lot of responsibility when I have my surgery so Im sure he will see just how much I do :) grins!
That is about all I have for now I think. Will write more soon I am sure after all the doctors appointments are complete. S~~
May 8, 2003
It has been entirely too long since I have posted an update here!! I cant believe it either!! This is usually so soothing but life has just tended to get in the way I think!! Things here have been so hectic between Garrett's work schedule and things at home. Not that anything bad has gone on really. Mainly the opposite but still. I should use this as my outlet. No excuses!! So here I am!!
I will give an update on Brie first. She's doing pretty decent. Shes still on the zyprexa. We had to up her sleeping meds just recently because she started getting up in the middle of the night and roaming which isnt a good thing obviously!! That seems to have done the trick for now!! Shes still on all the same meds but we have gotten a new possible diagnosis. Aspergers Syndrome. It is a high functioning form of autism. It pretty much means that she is eccentric and stays to herself a lot. Ill post some information about it here one day. It makes sense but Dr Spiegel wants her to have an EEG. I havent had a chance to take her in yet with school and the ships schedule so maybe one day soon. School wise she is doing pretty well. Cs and Ds which is good for her. She has about a month left and will be doing her EZ program again this summer to retain information which is good.
Garrett has started to go out to sea again. So far so good. No upsets majorly with Brie. Our friend Bridget is staying here to help me out with the girls and to keep me "sane"!! Its a big help.
I am doing ok pretty much. I have had a few wacked out dreams. I also went on Allegra and found out that along with prescription cold meds, allergy meds fall in that category too that I cannot take them. They make me manic. So do steroids. I had been on them when I had my surgery. Ill go into that in a bit. I had two explosive episodes within 72 hours on the Allegra. So once I stopped taking it I felt less edgy and much better. So that was definitely what caused it.
In December I had my surgery for the cyst in my ear. It turns out that it was worse than they had thought. It was planned to just be a clean out of the cyst and it had eaten away all three of my hearing bones so they had to take them out. The procedure that they did is called a T mastoidectomy. I had a cholestiatoma. I go back in June for a prosthesthis to be placed in ... Three fake hearing bones because right now I have no conductive hearing. I got an infection with the last surgery and ended up in the hospital for four days before Christmas because of blood products they think. I was sick for about two months. I could barely move without getting so dizzy I would almost pass out and hit the floor. That is why I was on the massive doses of steroids and antibiotics. I dont ever want to do that again. They made me swell up like a beached whale for one and the side effects with my BP were unreal!! I picked up my kitchen table one night because Garrett told me I needed to clean up the house!! Tossed it across the room like it was nothing. This is a FULL wood table!! We look back on it now like it is funny and laugh but it wasnt too funny then. I proceeded to tossing the chairs after the table. I now have a new table and chair set that is much smaller and I put them together myself so I think that I will probably think twice before I go throwing them after all that hard work!! :)
Moes still on clonodine to sleep. Shes doing a bit better on that but doesnt nap at school any more they say. Shes awfully hyper now too. And as much as I really didnt want to do it we are fixing to start her on a trial of adderal just for the afternoons. That one is getting too big for her britches!! She thinks she is grown. Brie with all her issues is one thing. At least we know what to expect from her in the long run. McKaela is going to be the one that is going to give us a run for our money!! I just know it!! We talked about that just the other night!! Shes already a hand full and shes only five.
I havent really had a depressive state in a while. The manic sides have been brought on by meds. Today I have been a bit down but I think that I just needed some alone time. I have been outside a lot lately and I am not used to it. I havent had time to think and be alone with my thoughts and I think that sitting down right now and writing all this out is probably going to be good for me too. I need some time to sort things out in my mind a bit and be alone.... Everyone says to me that I dont need to be alone because Ill get depressed but even I need to be alone a LITTLE bit!!
I find myself thinking about Momma a lot lately. Of course her death anniversary just passed... Then I had a really weird dream the other night too!! But its not just that. I miss her but I havent cried except in my sleep. I dont know really how to explain it. I just think about her. Its weird.
I spoke to Darin not too long ago. For those that are reading this and dont know, Darin is my brother that my mom had given up for adoption when he was a baby. I found him in 98. We havent spoken in a while and he called me up!! He told me he loved me that night. It was actually the first time he had ever said that too. I cried!! It was the sweetest thing. Hes involved in some stuff that I am not too happy about but I am trying not to think too much about it because I keep trying to remember that I cant fix everyones problems.
Everyone is always telling me that. That I worry too much about other people. I cannot help it. I care too much!! I need to stop. But I cant. That is in my nature. It was the way that I was raised and yes maybe some is also brought on by my illness as well. Who knows? Its hard to say.
Well, I probably could go on and on but I actually have to take Garrett some food to the ship so I need to close this off for now!! Hope that you enjoyed my mindless ramblings!!
For now.... ME
