Friday, September 24, 2010

Multiple Chronic Illnesses

As you may have seen I have changed the name of my blog and the info about myself.  I had originally started this blog to talk about my chronic intractable migraines.  But, I noticed that through my blogs my other chronic conditions interfere/interact/co-exist and shouldn't be denied. 

Rather than simply referring to them all the time I need to give them the credit they deserve.

I was writing a post - that I have not published yet - and in doing so started some research on another of my chronic illnesses.  I have been in so much pain for so long due to the non-stop migraine that I saw everything - even those illnesses that I had been diagnosed with previously - through the haze of the chronic migraine.  I then took the time to start research on each of my chronic illnesses.  I didn't come up with anything that doctor's hadn't told me but I also was lately the last few years also only hearing them through the fog of the chronic migraine.  Somehow I had convinced myself if I fixed the one the others wouldn't be a problem.

In doing the research freeing my mind I found I cried and found that I came out of the haze and the fog and saw my illnesses for what they are.  A part of me, and even if a magical cure which doesn't exist for my migraines came about, I would still have to live with these illnesses and their disabilities and I needed to recognize that. 

Although it is sad it is also empowering.  I have become stronger for it. 

I live with Hypothyroidism - those of you living with it understand how hard it is and I did keep it separate as something I had to deal with.  Every time you think you have it under control, it goes out of whack again.  Yes, that is partially due to the interaction with my being in chronic pain.  But, I have to live with the hair loss, the bouncing of symptoms when my levels go up or down with the thyroid hormone substitute and with how all interacts with my sleep cycle with pain, with other medications, etc.

I live with Anxiety - I have all my life.  It causes the pain to get worse, it causes other conditions, like my Essential Tremor, to get worse.  It interrupts and interferes with my life.

I live with Chronic Intractable Migraines - I have had migraines all my life - you can read the blog - and they got more and more often but always lasted 3-5 days or longer.  It got to where I had them 3-5 times a month and it was extremely interfering with my life.  Well, I thought that was bad.  In January 2008, I got a migraine and it didn't go away in 3 days, in 5 days, in 2 weeks, in fact it is still here - it is here when I sleep, when I awake, when I try to rest, always I live with it and good days are still very bad pain.

I live with NCS - a type of Dysautonomia - it is also called vasovagal syncope.  Technical term is Neurocardiogenic Syncope.  It causes fainting episodes during which I have "seizure like" movements.  But in research I found it affects me even when I am not having an episode.  See my post from August 2009 on my top 5 most embarrassing fainting episodes as I tried to bring some humor.  People that have seen it - like my husband while we were still dating - see it as extremely scary.

I live with Narcolepsy w/o cataplexy - it is so hard to describe because people automatically think of the amusing Hollywood interpretation - but it isn't like that and it is an invisible illness and people think you are find and can't understand what's wrong with you.  Thankfully I had the sleep study that confirmed my symptoms and gave me a diagnosis.

I have Essential Tremor - some people call it familial tremor since it is hereditary.  You may be able to go through most of your life with minor hand tremors that don't interfere with your life.  For me, the chronic pain and the anxiety have kicked it into high gear.  Although it was getting bad before that - I recognize that now.  I thought that because my mother has tremors but they still aren't that bad that it would be a long long time before it became a problem for me.  My Essential Tremor is now of great concern to my doctor's as it has kicked into high gear.  It is embarrassing as people (strangers) look at me as if I am a junkie or something; sometimes my legs shake too much to drive.  Writing is almost impossible now.  But, the joke is trying to take out contacts or trim fingernails or eat a sandwich!  I can talk more about that later.

I live with Tinnitus - a constant ringing in the ears.  It started as a precursor to migraine attacks - like a warning - but when my constant migraine came so did the Tinnitus start and never end.  This may seem small but for those who live with it you feel like you are going crazy - let alone it being hard to hear others, not being able to stand the silence because the ringing is all there is, and other things.

I have low blood pressure - which apparently is common with a lot of people, but not all, with chronic migraines.  Generally, I run around 101/72 - not bad - but is a problem because medicines for my Essential Tremor and other illnesses lower my blood pressure so I can't take them.  And pain and anxiety lower it further - I was at the doctor on Tuesday and it was 82/60 - well what can I do about that.  Be happy that I don't have high blood pressure, YES, but not be able to take certain medications and feel faint a lot - not good.

Lately - over the last 8 months about - I have started dropping weight significantly.  I have rarely been overweight - pregnancy (I gained 80 pounds with my first and 60 with my second); and after having been put on high doses of steroids in the summer of 2008 I gained a lot of weight.  But, now I keep losing.  I was happy when I was back to where I was before the steroids, but it kept going and keeps going.  So, we have to be careful with medications that may cause me to lose weight or be more nauseous than the migraines may already make me.

I do not think I have multiple chemical sensitivity but with my chronic migraines I am extremely sensitive - I cannot know when a smell will hit me unexpectedly in a store or wherever and my pain spikes so quick I go into a faint.

I plan to write blogs on each of these but the real truth is that every blog about any of them is affected by one or more of the others.

More later - much love and take care,



  1. i so understand what you are going through. i have had headaches and migraines since i was ten but has i have gotten older, 34 now, other things are happening to me. i have become very sensitive to smells to the fact that i have had to alter my life around just that. and to add joint pain, PCOS, all over sick feeling that will not go away. I just live with the hope that i know that one day God will end all this pain and bring about a new earth with no sickness.

  2. I'm Hypothyroid, mine is autoimmune so know it can start other autoimmune processing going (like my hives) and cause all kinds of havoc.

    Familial tremor runs in my family, so sorry you have it. For my grandfather it made eating a difficult process - weight is hard to keep on!

    You are more than the totality of your illnesses! I value the person that is underneath it all.

  3. Thanks! I am more than the totality of my illnesses! Thank you for valuing that and I hope I can do a better and better job of doing that myself.

    I think many of us, Fighter, have multiple illnesses when we have one - I think they connect. Except my hypothyroidism, the rest are all neurological and many can be connected with similar starting points/or the nature of my brain.

    It is so hard when you feel like you've been smacked down and then when you start getting a grip you feel smacked down again.

    They say God doesn't give you more than you can handle. Well, I don't feel like I can say I know the mind of God. But, I can say that I have heard from doctors over the last year as things got worse and I was trying to keep going with my type A personality "I can do anything" and not just keep working but excel as if I didn't have road blocks and as I tried to fight through this as I fought through other obstacles in my life. My doctors said - maybe someone is trying to tell you to STOP and slow down and get to know yourself and maybe do something else and lean on others a little and quit trying to fight everything. I remember one doctor saying - you can't fight through this like your divorce depression because it's medical and your body is telling you to quit doing what you are doing - as it was getting worse the more I tried to ignore it and force through my life as it was before.

    I don't know about a world without illnesses. I also have been told that pain is important because your body is communicating to you. Sometimes that's hard for even me to swallow. But, I have built strength and I am finding other parts of myself other than the person I was. There are things to be grateful for.

    But I still can hate the conditions. But, not all that I am!

  4. I'm glad to hear from you, Elizabeth. We're definitely more than our illnesses even though managing them takes a lot of our time.

  5. Hey Diana - long time no speak - my fault I've been down and out of the loop and slowly moving my way back in.

    Take care of yourself!


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  7. Sorry so long responding Jessica - I will email you the information I have because it's too much to put in here. You take care! I really would like to go back because I think it would help me get back on track but I cannot afford it right now and don't know when. I had a fight with my insurance company to begin with. That's one thing I will need to emphasize is talking to your insurance company before you go - it is hair raising. Also now is a good time to request all your medical records because it is really helpful to take them with you and Drs and hospitals can take up to 30 days to pull together depending. Lastly, I hope your doctor or neurologist is on board - it is helpful if there is open communication between them.

    By the way - my sleep doctor for my narcolepsy I was referred to here in KC worked under Dr. Saper and at MHNI for 5 years - years ago - so it was really helpful even though it wasn't a migraine issue to have someone very familiar.

    I'll try to email you soon with all the info - I have a lot of it out right now - although scattered - for my disability paperwork.

    Best of luck and you take care of yourself. I think meditation is best for anxiety and acupuncture although I haven't had $ for my acupuncturist lately unfortunately although he still says to call him. But, it helps but doesn't seem to stop it at all in any way - still anxiety issues cause problems with other illnesses and by itself is hard.

    I feel for you - much love - will email soon.

    Elizabeth - last I think I will delete your comment so others don't see your email address - but I am so happy for it!

  8. I also have more than one chronic illness, which like to co-mingle in unpleasant ways. I have fibromyalgia, hypothyrodism, asthma and severely chronic migraines (more days with than without for sure). It is extremely difficult to have a balance when all these conditions can flare another. For example when I take a triptan it can cause an asthma attack... the asthma medication can cause migraines.

  9. Myth - I so feel for you! Sounds like we have a lot in common - unfortunately - but I feel better not being alone. Thank you!

    You are so right - it is so hard to manage one that causes problems with another, etc. That's been a big issue for me. My hypothyroidism keeps going "wacky" (my doctors word even) and we think it is because of other changes - whether in medications for other conditions and because I've had significant weight fluctuations as a result of medications and stress and chronic migraines. Trying to put it all together and then one goes awry. Besides my hypothyroidism, my Essential Tremor has gotten out of control and become a major concern for my neurologist. Of course I still have constant chronic migraine - living in pain is par for the course at this point - but we have to watch that and what meds I can or can't take because of my NCS and vascular vaso spasms and on and on.

    It's a never ending ride. One thing that helps me is that my "team" of doctors don't give up and push me off - they just keep hanging in there and working hard to keep adjusting as needed. They offer me great support. I hope you have or find that as well.

    Take care and best wishes.


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