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The people who read my journal regularly most likely already know this, but since I do not expect new readers to go back and read every post I have ever written I figured for new readers I would post it again (and if I remember I will link it to the links sections)

The bulk of this post is under cut because it is medical related and I know not everyone is going to want to read it, but the jist of the post is, occasionally my medical condition will get severe for long enough that instead of a few days between posts, it could be months.

So I have some sort of nervous system disorder, which one it is specifically we do not know, the only thing my doctor would commit to was IBS-A (http://en.wikipedia.org/wiki/Irritable_bowel_syndrome) .

I have probably had the disorder since birth based on what my parents have told me since it getting worse, but since when I was an infant IBS wasn't something most doctors knew about, they just thought I was fussy so we don't really know when or how it started, or if it was just something that I was truly born with (that seem to be rare for infants to be born with active IBS but I guess has happened).

I have also always had headaches, but I always just thought they were tension headaches when I was in school. We had weighed my backpack once in college and it was more than half my body weight so you wouldn't be surprised I had headaches. I wear glasses so when the headaches started getting worse and more frequent I had my eyes checked, but for some reason didn't equate the lack of improvement from the new glasses with something more wrong than just having needed a new prescription. Then a major migraine hit, but before it did, something that had never happened before came on, I had mental fogging, didn't know where I was in a place I would be twice a day every day of the work week for the last year and a half. I now have very regular (daily) migraines, some are short (few hours) some last two or three days (which is usually when I start crying from the pain).

When people have migraines there is normally a pre phase they go through kind of like a warning signal telling you to go into a dark quite place to try and prevent it from being any worse that it could be if you did nothing to help it. For most people this seems to be a visual thing, for me is the rarer mental fogging which means that even when the pre phase hits, I usually no longer know what is happening so I don't remember anything from the pre phase, the migraine phase, or the post phase, which is also mental fogging. This is probably the only reason why I am still sane.

There do seem to be three different options for me when it comes to the pre phase and that seems to relate to how long the migraines will last and how bad it will be. To describe mental fogging for me, what little of it I can actually explain, and please remember that all that I know about these phases is based on what Kevin (my wonderful husband) has told me about it after it has come and gone, it is like actually walking around in a fog. Let us say that you and a friend are carrying a very large board down a path and it is a foggy day. If I am having light mental fogging, which is still enough to consider me disabled, I can see the person at the front of the board, but I could only vaguely tell you what they looked like. What happens in real world is Kevin asks me a question, he can actually see me trying to work out what the question was, then work out how to respond, and then very slowly speak the response, although the response may be missing some words and/or they sound very slurred, so the average person would definitely be able to tell that I am disabled, even on the phone based on speech pattern alone (or they might think I was drunk, but since I have never had alcohol in my life, that would be incorrect). The second level of fogging would be like seeing the outline of the person carrying the board at the front, but really not being able to discern any details whatsoever. In these cases Kevin asks me a question and for the most part I just smile back to him and really cannot make any words anyone would actually be able to understand. The speech is worse than slurred, it is almost completely gone even thought I think I am saying something. This is probably when I get most frustrated because I know there is a thought, but I can't describe it to anyone. The last and most heavy phase of the fogging would be like if you couldn't see the other person carrying the front end of the board. When this happens, if Kevin asks me a questions I just smile, which is basically what I do whenever anyone talks to me so it is probably more of an automated response to attention than anything else. I can't even really make noises at this point and I also don't get frustrated because I am completely unaware of what is going on.

After around a year and a half of migraines which the doctors agreed I had, but would not commit to as a diagnosis, I developed joint and then muscle and then finally long bone pain. The pain sensation is not just in one area, sometimes it is the legs, sometimes it is the back, sometimes it is the arms, some times it is one leg and the opposite arm, it is very random seeming for now because we cannot find a pattern. I was already getting dizziness which made exercise difficult, but now most days it is virtually impossible, so on days when I am not feeling pain in a joint/muscle/bone that I can exercise, I tend to over do it.

Unfortunately in all of this we have discovered that I am very chemically sensitive as well. This may be because of the IBS, it may just also be one of the joys of being me, but every medicine that they have given me to try as caused either a severe allergic reaction or one of the more severe side-effects. I even had an allergic reaction to an allergy medicine, I didn't know you could have an allergic reaction to an allergy medicine, I thought that was the point, to not have an allergic reaction.

So somehow my brain has managed to cope with the pain and I have not sunk into depression, which I do count as a miracle (my mother suffers from depression and by all rights, I should have it by now because of the years of pain, but I don't.) So we go on the best we can, I try to keep myself distracted on the less bad days with The Sims and post about it, but these intervals of less bad days are usually short lived and the worse days come back and I unexpectedly stop posting for a few months. Doesn't mean I have given up the game, just means that for a while, my brain doesn't want to work at all, and my nervous system has decided everything will hurt at once. Fortunately once I come out of the worse period I don't remember it so for me it is like a very long nap, although I am usually exhausted after it because you don't sleep much when you are in a lot of pain.
 
 
 
 
 
 
*hugs*

I knew the rest but I didn't know about the severity of your mental fogging so this has explained a lot.

*more hugs*
Thank you, *hugs*
Wow, I'm terribly sympathetic. My LJ can go silent for weeks, but this is due to the more standard problems of being overwhelmed (usually with baby care) and not having the energy to post much.
Thank you.
I knew that you had some medical issues that caused you to have mental fogginess, but I was not aware that it was this bad because I hadn't read the older post. I think it is great that you still try to do things that you love when you can, and I have always found you to have a positive attitude. It is very good that you do not have depression because I am sure that that would make your life worse. I will definitely understand if you stop posting for awhile. I don't really know what to say other than I hope they can figure something out for you to help you to get better.
Thank you, I know we will eventually find the answer to my medical issues.
I know what we have is different, but there are some similarities. Epilepsy and migraines are related and even your fogging to me at least sounds kind of epilepsy like. Have you ever had an MRI? That's how I got diagnosed. I had 8 good years (I believe from pregnancy hormones as there is no other explanation why I had no seizures and could come of the meds) before my condition flared back up, had a seizure, got put in hospital and put back on meds and was finally after all these years given an MRI and diagnosed with Periventricular Nodular heterotopia. (PH) I was thinking what helps Epilepsy might also help migraine or whatever other issues you have.

Before medication epilepsy was treated with magnesium. I've started taking magnesium concentrate in a liquid form that I got from a naturopath. Just a couple of drops as I feel like it in a glass of water. It has definitely helped. Right now I'm only on a half dose of seizure meds which gives me a little fogging and tiredness, but I am still able to homeschool my two kids and I want to keep it that way. I know if I throw another seizure they will all want to put me on a full dose of kerppra. Those things already make me foggy and cranky so full dose I am trying to avoid at all costs.
Anyway I did nearly come close to a turn the other day. felt buzzy, vision started going blank in area. So I ran and had a pill and some magnesium and went to bed for awhile and it went away. Other days I've just felt a bit 'off' and the magnesium has made me feel better. Not that I am going to tell my neurologist about this as I'm sure she would still want me on a full dose. :P

Sorry for this long winded reply. Thought I would refresh your mind on what I had again so you might see I wasn't taking out of air about the magnesium. It may not do a thing, but it also makes the water alkaline which helps a lot of other health issues.
Thank you for this comment (it is okay that is so long). I have had two MRIs, although I have been told that unless I am having a migraine at the time of the MRI or it won't show so maybe that was a problem. I told Kevin about the magnesium and your comment and he is going to look into that and we will see if it is something that might be able to help me.
I had no idea your medical problems were this severe...I knew you had some sort of migraine issue, but nothing like this. I really feel for you, and I am amazed at how you are able to cope with all of this. Good for you!

I suffer from migraines too, but I do not have the mental fogging. I have vision auras every time and blindness when the migraine is a super bad one. I get migraines every day, but I can usually stop it with meds before it gets too bad. About once a week I have an unstoppable one, and it's just awful. So I understand a small portion of how you must feel, except not really. You are such an inspiration!
I try not to spend too much time talking about my medical issues unless it seems appropriate because while it is a big part of what is going on with me right now, it is not all I am and it is the part I least want to think about. Even with Kevin, if it is something that is an all the time kind of pain or mental issue, once he knows that it is happening, I try not to bring it up everyday because he knows that once a new symptom appears, it usually hangs around, although I always tell him when I have been having a better day because that makes him feel a little better.

I don't think the pain of a migraine or the mental fogging that I have going with it is easy and I cannot imagine the vision auras are easy to deal with either so I think anyone who copes with migraines must be made of some pretty strong stuff. I'm glad that most of your migraines are able to be stopped by medication as having to wait out a migraine is some of the worst pain I know of. I was taking a medicine to stop the pain once it started, but it was causing me to become really paranoid so I had to stop taking it. I do a lot of mediative and yoga breathing when they start because I find having to focus on controlled breathing helps me take my mind off the pain for long enough that on the few hour long ones I can usually get the whole way through it without breaking down into tears. The longer ones always get to me, but we are still working on figuring out non-medication methods of at least calming them so I can sleep.
you manage to stay positive and that's got to be a huge part of what helps you cope with everything fairly well.

if most of the drugs have been causing you such serious reactions, maybe you should look into alternative medicine?
Staying positive has probably kept me from being completely bedridden every day. It is a lot of work sometimes, finding ways to encourage staying positive. I told Kevin once that I may have been depressed at one point from the pain, I have lived with some level of pain for so long I can't imagine it never got to me, but I guess some how my brain decided it was better to be positive than negative and for as long as I can actually remember it has always been pushing for the positive. I credit being raised on Disney for a lot of that because it is stupidly happy stuff all of the time and may explain why I get stupidly excited over very small things, like pencils, Kevin still cannot understand how a $1 packages of holiday or cute pencils will have me giddy for a couple of days. I also look to people like Christopher Reeve (RIP) who dealt with much worse conditions and still managed to stay positive and try to create change for people with those conditions. Kevin said that Christopher Reeve had a lot of money to which I replied, but he still had to live with the reality of his condition which was being paralyzed from the neck down. I don't think any amount of money could make living with that any easier.

We did try acupuncture as well as physical therapy through my pain management class. I was really hopeful on both, but the acupuncture ended up not doing anything for me (although the person administering it was impressed with how calm I was every time we went because I guess most people are jumpy in the beginning and I have no problems with needles) and the only problem with the physical therapy is that is hard to do when moving different muscles makes them hurt more instead of less. I still try to stress and wish I could do yoga, but I have to keep reminding myself not to over do it, because my inclination is to over do everything.

Man I write long comments.
I just wanted to tell you how inspiring you are. You have taken such a positive attitude in dealing with your serious health issues. Like several others I have an understanding of chronic health problems. I have Meniere's syndrome, it has slowly been stealing my hearing for the last 19 years and put my on the disabled list. For the first 6 years I was suffering with almost daily attacks of vertigo that would last anywhere from 30 minutes to many hours. I crawled around throwing up and trying to take care of my babies at that time. Nineteen years later I don't get vertigo too often, but my balance isn't what normal people experience. I've been called clumsy, well I'll take being clumsy over a full blown vertigo attack any day. I also can sympathize with pain. I have had fibromyalgia for the last 15 years. It makes everything hurt, including my skin. Sometimes it feels like it's burning and no way to make it stop. I find that smiling and looking on the bright side of things is better than letting depression slip in (which you already are doing an incredible job of). Some of my kids call me Pollyanna, because I'd rather look at the bright side of things rather than focus on what isn't going quite right...I guess I'm not lurking now.

I hope you are having a good day.

A little long winded, sorry....
Thank you for your comment and I don't mind that it was long, I have been known to post a few long ones myself.

As far as I know I haven't had a vertigo attack, but am very clumsy and I agree, clumsy sounds like it would be preferred to vertigo. Kevin and I think that I most likely have fibromyalgia, but when we got to the point of attempting to get that diagnosed right at the end of my insurance it ran out of time before they would actually give me the diagnoses, so all I have is a doctor saying that is most likely what I have (IBS and Migraines are common with fibromyalgia). We think if I had gotten the diagnoses I might not be having to go through so many doctor evaluations for disability.

I am impressed you were able to take care of children while disabled. That is one of the things I have been thinking about a lot because Kevin and I both want children, but we have been afraid that between the mental fogging and the pain that I would not be able to handle a child on my own since Kevin would still have to work.

I would also rather look on the bright side of things than focus on the negative, negativity never helps you get passed the problem.

Have a good day :-)
I had four kids before all this kicked in for me...and then went on to have 7 more. It wasn't easy, but I managed it somehow. I think I had more good days than you have. I've got 6 kids at home now, the Menieres is easier to handle at this point in my life - but I suffer with the fibro pain. I've been in a flair up for several months.

Sleep is very important for people with fibro. If you aren't getting enough sleep then the pain is worse - at least for me. Because I have sleep apnea I started using a cpap machine and that helps. I also take something to help me sleep. I tend to steer towards natural type things because I've found that my system is very sensitive to many drugs.

It took about 8 months for me to go through the disability process (that was about 15 years ago), but I was fortunate that I found someone who used to work for social security and she helped get me qualified for everything. I hope you get qualified soon so that you can resume having some insurance.



Wow to managing that many children with Menieres and fibromyalgia, I've been trying to figure out how to manage one and not thinking it would be possible (the baby would probably never leave the floor the way some of my days go).

I have been learning that despite the conflicting info the doctors were giving me about sleep and how much I should get, I do seem to need at minimum 12 hours to even come close to functioning at all and 16 hours tends to do better. My primary doctor and neurologist kept telling me not to sleep more than 8 hours because I guess too much sleep can cause migraines as well, but I just cannot stay awake that long. I also have sleep apnea, but I am apparently allergic to the material they use to make the masks for the cpap machine because even with just the mask on my air ways would start swelling shut after a few minutes. They tried several different masks before they determined why I couldn't wear them. Right now I am using an adjustable base bed, the only problem is I tend to roll over on to my stomach while the bed is at an angle so I wake up with back pain.

Kevin says we have been waiting since April last year but recently we have been having more notices of doctor visits required, so maybe that is a good sign.