No question ... Just sad, confused and in pain

[onedaysoon2010]

I come to this forum many times a day, for many different reasons.

When I do come and read through the posts and answers, it helps me to gain a better understanding of what is going on with my body. Certain threads draw me in, giving me more and more insight as I read and start to get a glimpse into other's nightmares (I dub it that because it's how I see and feel everything going on around me right now).

I love the fact that this is such a close knit, caring forum. The support that drew me in to begin with continues to shine through each reply, thoughtful gesture, and fun times that definitely lift my spirits on occasion.

I finally told my kids about Chiari, sitting down with each one and trying to explain on a level that each child would understand. Their teachers/counselors at school know what's going on because other than being with me, that's where they spend the majority of their time.

I am a single mom of four awesome children (pretty sure I am biased on this but too bad :) We had finally just started settling down into regular routines, chores, coming together as a family then, one day, I stand up under a hanging wall cabinet and it's like life has drastically changed. Within a week of the concussion, my baseline headache rose from a 2-3 to a 4-5. Then the explosions of pain are coming up to 2 times a day but no less than 3-4 times a week. Thursday morning, my kids were late for school and I was late for work because I was on the dining room floor with one of the explosions. My neck, shoulders and back are constantly sore and stiff. I can't go and play with the kids anymore :( Wind and sunlight are horrible to deal with and as a person with allergies, I am attempting to hold in any sneezes and coughs that may try to come.

I've apparently had symptoms for awhile now, but like I have been reading, it's easy to just push them off on something else. My answer usually comes in the form of stress. That's what I have found to be the easiest thing to attribute the weird, random things that have been going on with my body. It's a relief and scary at the same time to have a basic concept finally encompass most of my issues.

It seems like everything is now hurry up and wait. I am frustrated that the first NL I saw barely touched my medical history, but I see my PCP on April 6, which is after my MRIs are done on the 28th. I will be checking to see if there is anything she can do in the meantime to control the pain in my back, neck and shoulders. And see if she can refer me to either Dr. Baisen (sp?) or Dr. Heffez ... Dr B has experience with Chiari and is in my Medicaid MHO ... not sure if Dr. Heffez is so that may pose a problem. Crazy NL appointment on the 10th of April to get the "official" results of the MRI ... but he's no good to me if he doesn't focus on my medical history as a whole .... so will be finding a new one of those :P

I miss playing with my kids. I hate being in pain and tired all the time. I hate noticing little, seemingly odd things happening and wondering if Chiari is the cause? Is it something else? Or worse, am I just overthinking ....

Thanks for listening.

[onedaysoon2010]

Thank you Mary :) It looks like my "research"paid off. Don't know why I teared up at your post, but I did. Maybe it was the reassurance that I did a good job looking. Those were the ONLY two NS that I found in the Milwaukee area that even stated anything regarding Chiari so I figured they were my best bets.

And knowing that Dr. Heffez will look at the MRI results for free helps. I worry a lot about my Medicaid insurance and who/what it will actually cover.

[Marybz]

I just had surgery with Dr. Heffez  2 weeks ago.  He will look at your MRI for free and see if you are a candidate for surgery.  I am from the Milwaukee area.  I also am a RN, I work for Columbia/St. Mary's on a Brain Injury unit. I know that Dr. Baisden at Froedhardt does great work also, as she has done surgery on some of my patients that we get from FMLH.  You have come to the right forum, we all feel your pain.  You are not alone.  

[onedaysoon2010]

We have tried churches, but I have yet to find one that I am actually comfortable going to :( I continue to try, but while I am still looking, we have little bible studies periodically ... It usually ends up being at random times throughout the week because someone will ask a question and it'll turn into that.

I am so sorry to hear about what happened to your son. That's awful :( I'm glad you found out about it and can rectify the situation.

I will be talking with PCP on the 6th and find out what can be done, or what kids of things she suggests. The anti-depressant I was put on just went on my ever-growing list of allergies :( so that specific one is out. Guess we'll just have to try something else. Everything seems to be hit n miss these days. However, I have started to be a little happier just based on the fact that I kinda started dating again :)

[Shelltn]

Only part of my other comment posted because my phone decided to go whacky momentarily, just like me I guess.... Anyway, I was able to repost it, I'm not trying to look like a complete doofus repeating the first part of it lol 8-/

My phone is showing its multidysfunctionality like its owner I suppose hehe

[Shelltn]

Training is hard enough & retraining is even harder when it comes to our children. Hopefully things will get better a little at a time, day by day.

I'm not going to try & tell you what to do because I've not lived a perfect life & I'm not where need to be, nor do I know your entire background or where you stand as far as Faith or Religion. You mentioned about what your kids were around growing up as far as because who you were married to, that I itself is an obstacle in retraining. Have you ever been in church or your kids? That is something I'm currently focusing on especially since I've withdrawn my son from the local public school system& he starts at a private Christian school tomorrow. He is so excited about it. I'm a single parent with only my  income for financial support, no child support or alimony, & it's going to ne tough but I'll make it work somehow. My son is 11& had been being teased, bullied,& sexually harassed at school for over a month & he had even let the principal & assistant principal know back in Feb & they didn't even inform me about it.  Of course, my son told me he was embarrassed is why he hadn't said anything sooner,& who can blame the poor kid if he had told the princ & asst princ& they didn't think it was important enough to tell me or much less do anything about it...how could he trust adults after that? I'm sorry to go on about it, but I'm having a harder time with this than he seems to be having, thankfully. I mean, I've cried & thought how dare them? I trusted them with  my son, they knew this was going on & did nothing & didn't even tell me? I've already been asked 3 times if I'd reconsider & let him come back....well evidently they've all fallen out of the stupid tree & hit every branch on the v way down at least twice! They know they're in trouble.... I just know I had no  choice but to remove him for his own safety & well being & for my own sanity & peace of mind.

Sorry again for rambling....

Maybe ask your pcp for something to help you relax which could in turn help relieve your stress & extend your breaking point limit, if u catch my drift as far as level of aggravation with what you have to deal with in your everyday life.  My shoulders aren't as tense which helps with my neck pain some...

Hope you feel better soon :-)

Shell

[onedaysoon2010]

Well, we GO to the park. They just don't get why I need to sit in the shade and can't play. Then when we do get home, I'm exhausted from sitting in the shade :-( and then I feel bad and I'll push it for a few minutes playing tag or pushing someone on the swing.

I guess a lot of my problem is that I don't know what I shouldn't be doing. As far as I know, I have nothing that I shouldn't be doin at this point. Things I read (and my body) tell me a different story though ... I've been pretty good with sucking up headaches and pain for so long I guess I just don't know when to quit and then I'm out of it for days ....

Thank you for your response. I'll keep hoping n praying for awesome play dates with our children before its too late ....

[Shelltn]

Training is hard enough & retraining is even harder when it comes to our children. Hopefully things will get better a little at a time, day by day.

I'm not going to try & tell you what to do because I've not lived a perfect life & I'm not where need to be, nor do I know your entire background or where you stand as far as Faith or Religion. You mentioned about what your kids were around growing up as far as because who you were married to, that I itself is an obstacle in retraining. Have you ever been in church or your kids? That is something I'm currently focusing on especially since I've withdrawn my son from the local public school system& he starts at a private Christian school tomorrow. He is so excited about it. I'm a single parent

[Rahe28]

I know how you feel when it comes to your kiddos. I have of them Logan, DS, 7; Austin, DS, 4; and Paris, DD, 3. I also have a ten year old step son. I tis really hard when your kiddos are used to you being up and actuve and running and playing footbal, or swimming, or kneeboarding in the lake, you name it. It sadens my heart when my children ask, mommy....if your head doesnt hurt, can we go to the park, or can we go ride our bikes on the levee? They should never have to ask in that manner. I started planning my two smallest ones birthday party. (they are 51 weeks apart) because I have always thrown wonderful, amazing parties and I dont want to let them down there too,so I started planning now for June since I do most of the decor details and cakes myself. It seems more personal that way. Thus years theme: Woody and Jessie from toy story 3, go to the beach!!! It is going to be amazing. I try to get them to help me in the dailt things and they do, but they are so young that it is imited to smaller stuff. Thank goodness for my Logan though, without him...I would be in trouble. My hubby works  hour days, so he is the man of the house when daddy is away~ persay. He helps me with the babies alot. He does dishes, gets drinks, makes snacks, etc. He is truely my helping hand. I just want to be more active with them. They deserve more, and though they always understand when I dont feel well, if I were them I would be thoroughly disappointed that I could not go to the park for a month at atime because mommy has a bad day. Good Luck to you all, and I hope that you all find peace with your troubles, and I will be praying for us all to have a play day for our children <3

[onedaysoon2010]

That ***** that you can't hold your baby :( That is something that I totally couldn't imagine in the least. I am grateful that mine are all to the point where they can technically do things for themselves if needed (even the 6-year-old can make a hot dog in the microwave if it's necessary and the others can help with the more advanced things). Going to the park is definitely frustrating, especially since they remember when I could still run and play with them.

Verbal conversations are ok, until my words start to slur or I can't hold back my lisp anymore. Then people start asking what's wrong. So most everyone at work knows already and do their best to be supportive about it. My boss has given me lighter duties and ones that are more immediate than long-standing so I can still work relatively efficiently. Everything that I have to remember that may be more than 10 minutes out is placed on my calendar so a reminder will go to my phone and let me know I have to do it.  

After reading through post after post, I've realized that I seem to be one of the lucky ones who got a diagnosis BEFORE everything spiraled out of control. My PCP found the CT scan findings significant enough to refer me out to the neurologist which is definitely good (even though I didn't like him).

Thank you for your kind words and encouragement.

I hope you get some answers soon and that your tests go well.

[onedaysoon2010]

As awesome as it would be if they understood the concept of "mommy time," that will definitely take some time. I can't expect them to totally get it right away, based on who they are as individuals and what they have learned growing up (due to the person I was married to). Since the divorce, I have been slowly reteaching them. My boys are usually pretty good about it.

If Alex (6) knows/sees that I am napping, he won't try to wake me up unless his sister persuades him to ... UGH. He will just lay in the bed with me and watch TV or play on my Playstation quietly or even better, nap right along with me :) Kalob (14) is kinda in charge of basic things in the house, helping me out if I ask (or trying to delegate out things to the younger ones which usually backfires on him) haha.

The girls are a different story. Victoria (12) tries. She listens pretty well when it comes to chores and helping me out but is very clingy and never seems to remember that I am in pain so tends to be a little on the rough side when coming to me for affection/attention. Constantly reminding her that she needs to be more gentle with me ;) And then there's Alliya (9) ... where do I start with her? She can't follow directions to save her life. She constantly has an attitude when I have her do her chores and I think the worst part right now is that if I am sleeping, SHE is the one who will yell into my room for 10 minutes straight until I finally "wake up" (or send Alex in there) and wonder why she can't have a snack (because by that time, I am so frustrated and angry that I don't want to give her anything at all).

Oh patience ... Oh not stressing ... lol wish me luck on that. Although patience is something that I used to have an abundance of, now it seems that I have so little that everything just ticks me off immediately. Stress seems like it's been a constant in my life for so long that who knows if it will go away.

And my problem with "being on the computer and researching so much" is that my JOB is computers (fixing them, researching ways to make our network run smoother, teaching others how to use them). My mom had told me to get up and walk away when I felt the need to look it up, yet again ... I kinda chuckled and thought of the irony of the situation.

I like my PCP ... if I tell her I am hurting as I am, she will prescribe me pain meds (whether I will take them or not). It happened at one of my other appointments. I have another condition called hidradenitis suppurativa where I get huge abscesses in really BAD places. I had an appt with her and she noticed I was in pain. I told her no, that I would jut deal with it like I had been. She prescribed pain meds and said that they are there if I needed them and encouraged me to take them so I could be more comfortable.

And the problem with "new" symptoms cropping up is that I really can't remember if I have had some of them before :( Otherwise, I am just so used to writing them off as side effects of stress that it's hard for me to grasp that they may possibly be from the Chiari. *sigh* Mom says that the more I find out, the more I will recognize them as possibly part of Chiari and I guess what bothers me the most is from having to be supermom for so long, and being what I feel is on the "s*** list" of medicine, is that I have ignored a lot of things that have been going on with me in the past few years. Referring to the "s*** list" encompasses all the things that seem to fall in the "1 in xxxx" range of things.

I have to continue work. I am the sole monetary provider for all 4 of my children. That just doesn't seem like an option currently. Anyways, back to my 4 true loves of my life, they will get it eventually (I hope). In the meantime, we are just slowing down on the things that we do on a regular basis. At least I think I am, but my schedule still seems pretty jam-packed with stuff. I guess that I will have to try a little harder to slow it down some.

Thanks Shell :)

Shell

[bledpub]

I'm very sorry you're going through this and have a good understanding of how you feel. I've been trying different medications and treatments for four years now and nothing has worked. I am now at the point where I am no longer able to hold my baby (8 months) or carry her due to the weakness in my arms and the numbness in my legs that make me unable to stand or walk for more than a few minutes. Likewise, I am unable to play much with my 5 year old. He doesn't remember a mother who went outside and ran with him and played with him.

I have deteriorated so much over the course of the past few years that I am nothing like the person I used to be. I was accepted to Harvard and hold 3 degrees and now I can't even follow a verbal conversation. I am in constant pain. I have to write down the times I have fed my children and changed diapers because I literally won't remember if I have done so or not.

I hope you get some answers soon and that your tests go well.

[Shelltn]

This is a wonderful place for emotional support & understanding because we all know first hand what this condition can do to a person physically, emotionally,& mentally. My kids are a bit older (19 yr old daughter in college&11 yr old son about to start a new private Christian school because of major issues with local public schools- I posted in another forum for the 1st time about it just because I was needing to vent about this past week being the most trying time I've ever gone through, even with my health issues, there's no comparison) So, go ahead & let it all out, I've cried like a baby everyday this week, not in front of my son though, you know, the v while supermom thing lol.

Selmas is very informative, I call her my medhelp momma :-)  she tells me very often that patience & not stressing is going to help more than most anything else (may have paraphrased a bit but memory issues word for word statements can be blamed on my chiari issues :-/)

I know my pcp fussed at me for being on the computer researching so much & told me I knew more than her about it, stay off the internet
, all you're doing is worrying yourself probably over  nothing serious, well if it wasn't for my persistence, I wouldn't know what was wrong with me fine my last NS didn't inform me of what I found on my mri when I got a copy of it to take to another specialist. Anyway, my persistence paid off & I'm finally getting more tests done while waiting to go see my Chiari specialist at Vanderbilt next month. My pcp didn't want to prescribe any pain meds that might "mask my symptoms" in her own words, whatever, I've dealt v with the v pain for almost 2 decades, a few more weeks is tolerable for me knowing I'm finally going to see someone who knows, understand, & won't treat me like I'm a froot loop when I describe my symptoms.  She did at least, finally prescribe me something for my nerves when I had been to see her several times over a couple weeks time span & some new symptoms were scaring me so bad that she knew something had to be done & I had lost almost 10 lbs during those couple weeks because I was a nervous wreck....

The meds help with the constant tension in my neck/shoulders/arms, doesn't completely relieve the tension/pain, but it does help, especially since I'm still having to work (sewing factory, constantly looking down & lots of pulling, lifting, tugging & pcp says wait til appt next month to see about continuing or not continuing work because she isn't a specialist-just another episode of the  total chiari run around)

Anyway, vent all you need to.... I know it's hard being supermom, but your babies understand mommy needs mommy time & their support I'm sure.  You'd be surprised how much a little more responsibility can actually help mold them,  it won't hurt them, that's for sure. Plus when they see that less stress on you is very helpful, they may take more initiative in order for you to be more comfortable & productive once supermom has had a chance to recharge a bit.

I hope you are able to enjoy the rest of your weekend...

Sleep well...

Shell

[onedaysoon2010]

My PCP is good overall with my care, in my opinion anyways. She read the report from my CT scan and knew I needed to see someone ... apparently it just wasn't the right someone. I went in not really even knowing why I had been referred there and he seemed to automatically assume I was thinking surgery. I didn't like him enough right off the bat to let him know I had looked up some stuff. Just an all around donkey. I definitely will be having an in-depth convo with my PCP on the 6th.

And sorry for the misunderstanding regarding the surgery. And thanks for replying :-) It helps to talk back n forth

[onedaysoon2010]

Yeah, I cry over what seems to be the dumbest stuff :( The limitations I have now seem staggering compared with what I had been able to do prior to the concussion. My oldest had to finish grilling the food last weekend because I just couldn't take it anymore .... I just feel useless at this point :( I am trying to be patient, but that comes with great difficulty as I am working to "control" everything that is going on with me and around me. Another thing that this seems to have taken (hopefully temporarily) is my patience. I lose it over the dumbest stuff now. I hate it. Just want things to start to settle down and get used to what's going on ...

But every time I think that I have started to get things under control, something else pops up that I have to handle. But I guess for all of us (me and the kids) this is a day-to-day thing that we have to adjust and get used to.

[onedaysoon2010]

I am not looking for surgery, just something more concrete to go on. The first words out of my NL's mouth when he walked into the room was that I shouldn't have been referred to him, I should have been referred to a NS off the bat. And while he can oversee my care, he doesn't fill out "paperwork" for worker's comp, short-term disability, etc. All I have been doing is research ... I think that my head will explode with the amount of information that I have taken in over the past few weeks :( And while I understand that there are limitations, I am frustrated by the enormous amount that I have been trying to figure out lately ...

I am not one who leans on others very easily and have few people that I would even trust to be there when I really need it (even though they all are saying to let them know if I need anything). The ones that I know will be there are always asking and I don't know what to tell them ... I don't know what I need or want at this point. I can't even keep my train of thought long enough to finish buttoning my shirt before I got to work in the morning :(

My kids "seem" ok. There are definitely gentle reminders here and there because they are so used to me being "superwoman" and we are all learning to adjust. The one I worry about the most is my 6-year-old (my baby and momma's boy). He has stopped sleeping in his room again. He wakes with me when I have bad headaches and runs to get cold water and an ice pack for me out of the freezer. The bigger ones (9, 12, and 14) are starting to try to come together a little more and step up a tad to help out, but with them, it's still like pulling teeth :)

Although my mom won't be there for these 2 upcoming visits, as she will be on vacation, she will be coming to the subsequent appts I have so that she can help me ask questions, help me focus and organize. And yes, the waiting ***** (coming from someone who's patience has come very close to running out and who's a control freak)

[linnielou232]

My heart hurts as I read your post.  I know exactely what you are going through because I was there one point in my life 2 yrs ago.  It wasn't with my kids, but my grandkids.  I would cry in front of them at times because I wanted to enjoy life with them as I did with my kids and Nieces and Nephew.  I also can relate to the experience of your NL.  I think most of us have dealt with this a time or two.  Just know that it does get better.  I had surgery.  It was a tough road, but now I look at the day's in a better way because my head allows that.  You will find that having Chairi is life altering.  I used to be able to enjoy the day with a day of gardening, but as for today as an example I was out there for and hr or two and had to come in and rest.  It's an adjustment and I'm happy to hear you had a talk with your kids.  They will be able to help you and understand what is going on.  As far as your Dr's.  This is a flustraing journey, but get into the one you will be comfortable with.  I wish you the best in this journey, but do know your not alone.  My heart is still with you, but it lifts my heart knowing that you will have better day's with yourself and your kids.  It just takes us a little more time.  Please be patient.  It is a life lesson I had to learn from every one on here.  Blessing sent your way my Chairian friend.
Linda :)

[selmaS]

  Hi...this is not an easy journey and there is no real answer...surgery is not always the fix people want...we do have to live  with some limitations...and that is especially true post op...we have to be patient.

Those that try to rush thru, tend to have set backs....

Stress will make  u feel worse, and yes, that knock on ur noggin most likely triggered ur symptoms to worsen.,

Make sure u spend time researching the Drs and the results of the surgery they do...and ask what they plan to do, and what  or how they expect it to help u.

  How did ur kids respond to u telling them of ur Dx?

  The best thing u can do besides research drs, is vent...that is the reason for this forum, so u have a safe place to express how u feel, and know someone will understand.

  I wish there was more we could do while u wait....this is the hardest part.