My story!

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1

I just joined this site last week. So far I am so sorry for everyone, but I am so glad there are really other people here like me.

Through this site I have figured out that I may also have ON. Something I have been telling my doctor the symptoms to forever. He said that had something to do with my migraines and ATN. Just wait until I see him next week he is getting an ear full.

It never fails, If I have something scheduled or going on YOU CAN COUNT ON THE PAIN!!! WHY??? of course the why me also, but that is just selfish!

A little bit of my background, I have had this illness for so long and my memory is just getting worse. I will tell you what I can remember at this time. My husband usually has to remind me of this journey. I have a wonderful husband that really understands and doesn't think I'm crazy. I hate what it has done to our family. My guilt, hurt, not able to provide financially and emotionally for my family and my depression!

During this period of time we lived just south of Dallas, TX. I had a sinus surgery because I had awful sinusitis back in 1997, my chances for a successful one was 99%. I'm sure you guessed, I was the 1%. Had to have sinus surgery again in February 1998, this is when it happened....Of course they had no idea at first what it was. I lived on pain medications for a few years before getting my diagnosis. I really lost it, knowing it wasn't ever going away. I have been to so many doctors over this time. The Neurologist saying I wasn't a candidate for surgery, learn to live with it.

I would try anything, to keep on going. I had the nerve block injections. First time it helped for a day,, second time was a bad thing. I have had so many dental procedures and at a very expense cost. The end result there was I just ended up having all my teeth removed and are wearing full dentures now. I was very desperate and going broke at the same time. It has been a few years now and it has actually helped the pain that used to radiate and shoot through my teeth and made me feel like I had multiple toothaches at once, made my gum's swell like crazy. Although I still have swelling on the left side of my face. For me, I think it was great to help ease with the pain I had going on! It hurt my ego more than anything, I felt even more had been taken away from me. People that don't know, don't know. Only my family and 2 very close friends Now I have told all of you!!!

I went to another surgeon, he was just to quick to say, "Yes, we'll put you on the books and can do it later this week" are you kidding me??? I went from not eligible to eligible and he wasn't talking like it was a big deal (Gamma Knife). NO, I said no way.....By this time I am on so many opiates for the pain, meds for anxiety, depression and sleep. Along the years I had to have 2 more sinus surgeries. NOW I have neck facet injections and botox migraine pattern injections. I personally got off pain meds except I do use Stadol for rescue. I take Cymbalta, Zanaflex, Relpax, Ambien CR and Lyrica (I could be forgetting something)

I had to quit working 6 years ago. Now I am wondering what has happened to that person. I don't know what to do with myself. I really don't feel like doing anything, I thought I was being lazy because of all the fatigue and the loss of sleep. I am on disability but we did lose a big chunk of income. Medical bills just pile up...

My husband works out of town most of the time, he will come in for a weekend or take a week off here and there. My youngest son is home with me, he will be a senior in high school this coming school year. I feel like I have just taken myself out of day to day life. I feel like my desire for life is just gone and I have no idea on how to retrieve it!

I had been doing pretty good for a couple of months and then it hit again....You are always wondering when is it coming and the next thing you know, it's back with a vengeance!

I pray for wisdom, energy and the desire to continue on my journey!!!

I'm sorry if I have bored you to death, I know my story isn't exciting or in order but neither is my brain....

Thank you for reading and please post comments, advise or if you might be going through something similar to me.

I'm hitting the button to post. Here goes....

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Tammie, I'm so sorry to hear of your suffering, and for so long now. I'm only one year in, and sometimes I wonder how I can deal with this for 30 more years. But we find a way and we keep trying. Take comfort in your family, you are very fortunate to have them. I have a great man, but we were planning to have a baby when all this started, and now I don't know that it's in the cards. I may try, but who knows. And I am on short term disability and while I keep telling myself I'm going back, the pain is telling me something else. It's such a hard condition.

Please know you're a strong woman and you'll continue to get through, just as you have for so many years. Instead of thinking about the things I've lost, I try to think about the things I still have. And I know it can always get worse, so I try to consider myself lucky even with all this pain. It's people like you who give me the strength to know that I can go on.

Please feel free to message me anytime.

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Crystal,

Thank you so the kind words and the encouragement. I wish you luck on your journey for a family, the Lord only gives us what we can handle. I'm glad you have a great man. That means so much to me to have such a wonderful husband. I don't know where I would be today without a wonderful family, but I hate to vent to them all the time. Only because they have heard it for so many years.

When it is extremely bad and I can't get out of bed, then I have no choice. I'm glad that I ran across this site. Very true I do need to focus on the things I still have and are able to do on good days. There was a period of a couple of years I couldn't even drive. I am grateful for the little things.

It's great to have people that are suffering from the same illness. It is difficult for others to understand the level of pain we experience. I hope you are having a good day.

Tammie

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Hi Jackie,

Thank you for your note. You are such a kind person with extremely kinds words.

I have been reading other stories and decided to tell what I could remember at the time. There is so much it seems to all run together over the years.

We live about 2 hours south of DFW area. My brother lives east of Frisco in a little town called Lucas. If you ever make it to Texas, I would love to meet you.

It is wonderful to have friends with this illness. Thank you....You take care also!

Tammie

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Hi Jackie,

Definitely if you come to Texas, I would love to meet you. I totally understand about plane rides and high altitudes they can become very painful. I'm sorry you were in pain on a wonderful vacation, but we live and learn. I'm learning a lot of information on here.

Thank you for the notes, I really enjoy them.

I hope you have a wonderful day!

Tammie

6

Hi Donna,

Thank you for your comment. As far as having relatives from MA I don't it. My husband's family came out of Arkansas but he was born and raised in South Texas. I bet NC is beautiful, that is a state I would love to visit someday.

I get facial swelling when my ATN is acting up, you can definitely tell. My doctor will even comment on it. It can last as long as my flare up from a day to three weeks or so. As far as the hot, I've haven't experienced that as of yet. Redness sometimes but I like heat when it is flaring up. I use a sock and fill it up with long grain rice and put it in the microwave and use it like a heating pad because I can move it around wherever it hurts. If anyone tries this please be careful because the rice can really get hot and if you leave it on one spot too long it will actually burn your skin. Yes, I've done that before only because I was in so much pain at the time it didn't register that I was actually burning my skin.

I love this site. I am learning a lot of things and it is so nice to have others that suffer from the same or close to the same thing illness that I have felt alone in. It seems that no two stories are the same. That is probably why it is so hard to diagnosis.

Donna, I love humor and I love to laugh. I think it helps us heal from within...

What kind of specialist are you seeing in Atlanta? I've never left Texas for a doctor of any kind. How did you find him? That has been a journey all it's own, is finding a doctor that you trust and that will help you.

I hope you are having a good day. I'm a little excited because my son (he lives in OKC) is on his way home and my husband is home also!!! But in the back of my mind, I always seem to have the "what if the pain hits" going on. I don't like living like that. Do you experience that thought process?

Tammie

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Hi Donna,

I am sure the Lord will send someone special into your life at the perfect time. I also live pretty isolated. I can't say that I like it, but I guess with this illness it is nice and quiet. I have 2 dogs and I love them so much. They are my little babies and they love me unconditionally.

My son left on Monday and my husband left Tuesday so now it's just me and my youngest son. I hate my hubby having to be away for periods of time, oh well such is life. Of course the pain starts and now I'm in until it lets up. I am very blessed that I was pretty much pain free during the 4th. Unlike Memorial Day weekend I was in horrible pain. Does the weather make a difference in your pain?

I hope you are having a good day!!!

Tammie