Migraine

I feel like that might bring relief.

I'm miserable. I can't really spend the time needed to write enough to explain. But, my Migraine is unrelenting. And I'm feeling completely horrid. And of course depressed that I feel so horrid and that the pain turns my life so upside-down.

I've called into my dr. and have rescue meds and will be seeing him on Tuesday, but what I really need is emotional support.

Someone called to see if i was okay today and when I said how I was. They were like...well, I'm glad you are not as bad as I thought you were. I'll stop worrying now. I'm glad you're okay.

I don't want anyone to worry about me...but talk about NOT feeling validated in my excruciating pain. The way they came across was if they were relieved I was only in the amount of pain that I am in. Which, I'm sorry, is a pretty huge amount. I know this person may not have meant for me to feel what I did in hearing them be relieved...but it doesn't make a difference. I still feel invalidated.

I deal with pain on a daily basis and push through incredible amounts of pain regularly. That doesn't mean that just because I'm not bad enough to be in a hospital that I'm okay. I think people forget that chronic pain does not mean that I stop needing empathy or care even with more moderate pain...though I wouldn't call what I'm experiencing right now moderate. Severe, definitely...but how to explain that to someone who thinks that its only a concern if I need to be hospitalized? more of a rhetorical question here...

I even emailed them to say I actually am feeling pretty rotten thinking maybe I wasn't clear and they misunderstood, and they wrote back saying..."but not enough to be in the hospital." Do I need a hospital now to verify I'm in a tremendous amount of pain?!

I'm so tired of soldiering on. But, I think that is really what I need to do...put my armor back on and try to deflect the invalidation I feel and soak in the compassion I feel from you all, my lovely forum family and DH.

Thanks for letting me vent. I really need to. I'm so thankful to have you all. Now to rest my horrid head and get some puppy therapy.

Kelly, sweetheart I'm so sorry you're in so much pain! And that your friend didn't understand...

I am sending you magic serotonin cake and and . I so hope you get some relief soon soon soon!

It's hard to deal with people who can't relate to what's going on inside us - and sometimes they can only know if we clue them in, just when we don't feel up to it - but maybe your friend needs to hear "I need your sympathy even if I'm not in the hospital" or "I'm hurting too much right now to be able to relate to relief - I just need hugs." I wish people knew what we needed emotionally without us asking, but sometimes they just don't.

Hang in there sweetie! We all love you!

- Megs

Hey there,

Totally know how you feel. Teri had a fit this week when I went in for an IV infusion and told her after the fact. That means it was day three of a Migraine and I hadn't told her how much pain I was in. Like you, I don't want people to worry, especially those close to me.

But I think I am in a different place now. It has taken a long time to get here and some days are better than others. This is the place of self-validation. It came along before I was "offically" disabled, after many years of searching for validation from everyone but me. I guess I got to the point where it just didn't matter to me if "they" thought I was sick, kinda sick or really sick anymore. I knew what the deal was and that is all that mattered. It is a long process, hard to cope with and even harder to admit. But I think we all get there.


I feel your pain, I know how much you hurt and NO you don't have to be in the hospital to prove it!

Hey Kelly!

I really understand wanting to carve your head like a pumpkin! I often think of the movie Pi when I have a really bad Migraine. I don't know if you are familiar with it, but the guy in it was trying to predict the stock market and was very smart. He would have headaches (probably Migraine!) and he would drill his head to release pressure. It really is a scary thought, but I can see how thinking that may help! Not that I would ever do that, but I have often wished to take out my eye due to the pain it was causing me!

Wow, I'm so sorry to hear that your friend was so cold on the phone! I was just telling my friend last night how much of the pain and misery I feel some days I just hide to make it easier...maybe for them, maybe for me, maybe just so they don't ask since telling them the truth would be too difficult or they wouldn't understand.

I hope your puppy therapy worked....and now you get double the therapy! I'm sure your new little baby is cuddling up with you right now, along with Knightly of course!

I hope you are feeling better very soon!

I forgot all about that Pi movie. That was a trip and a half.

Geeze, Kelly! That wasn't a tactful way to put things. I understand where you're coming from. "I'll stop worrying now" sounds an awful lot like "I'll stop caring about how you are". Like you don't merit concern if you're one iota better than before. Sheesh!

But...that is soooooo backwards. And rest assured you aren't gonna get that kind of treatment around here. We stick together, and we're not going anywhere. We're here for you, no matter what kind of day or even moment you're having. You are valid, and you merit that up the wazoo!

Oh Kelly,

How frustrating when someone close to you is, for the lack of better words, blowing off your situation. I wish that we could simply make others understand, but for some reason we can't. I really hope that they can soon open their eyes and see that you could use their support. But while you wait for that..... You have us. We love for you to update us on how you are. If you aren't doing well, we can be here to support you! many many hugs to you my friend! I hope that you find some relief as you wait for your appointment. And I hope even more that doc is able to get you out of this bad spot that you are in. Please do let us know how you are doing...
Much
Alaura

Oh- and please don't carve your head that bright smile would be rather sad if it took another shape. We just can't loose that now can we! Feel better hon!

Kelly,
I'm sorry I told you I would stop worrying, & that I knew you'd be OK. Behind my seemingly callous words were: "Whew! She's not in the ER! She sounds like maybe there's some hope in her voice. But, she sounds awfully tired, too. I think I'm bothering her. My voice must be hurting her more. I'd best hang up now."

That was the "back-door mesage" coming through with my few words to anyone I've called when I knew they were in pain. I always feel like I'm bothering people when I call them. Plus, my sister and DH have me trained to be short, sweet, and to the point on the phone.

I'm hoping the early sun brings you a pain-free day and week.

Rebecca, The Island Mama

Hi Kelly,
I just wanted to say that I'm sorry you have been in so much pain. These migraines are just awful. It is wonderful to have this forum where we always know there are people here who know exactly what we are going through. I hope you can get some rest and relief today and some love from your pups.

Peggy

I'm late in joining in the conversation but I just want to send you and . It seems like we're never not in pain in some way, and the support we need isn't always there. I hope you enjoyed your puppy therapy and you feel even a little bit better today.

Meli

Hi all. Yesterday, my pain was the worst it has been in a really long time. It was definitely a 10 and I am happy to say that I was able to use Amerge (and other meds) to bring it down to a 7/8. Dealing with a 7/8 today, but hoping Amerge will work its magic again. The pain was so bad yesterday and I am so thankful it has improved even though...the Migraine is still here.

I see Dr. N (headache specialist) tomorrow and I'm really thankful. I have a lot of hope still and know that it is just a matter of getting me out of this bad spell and back on track. Thank you all for being here when I needed you most. It helped me more than I expected to be able to get that off my chest and to hear your responses.

Megan- There is a lot of wisdom in what you said. Thank you for your advice. I like your suggestions because I am telling them what I need instead of expecting them to know or understand. Thank you so much.

Nancy-Thank you. It really is a process in learning how to let go of needing to be validated...or like you said caring what "they" think about if I'm sick or not. I think as I'm losing friends because I can't spend time with them/be who I was/keep up ect., it makes me feel more frustrated b/c I want them to understand that I haven't canceled on them/let their phone calls go to voice mail a million times b/c I don't care...but because I'm sick.

It has been almost 4 years of this for me...and I'm really still learning. And grieving too... I truly appreciate your perspective, and that you understand!

Eileen- I have not seen Pi, but the thought of drilling my head sometimes sounds like a nice relief (though not very practical...rats! ! It is hard to navigate talking about illness with people who don't have it...especially when it limits so much of my life!

Droolie- Thanks for understanding, my friend! It really is a comfort to know that I can come here anytime and find understanding. Being a part of our forum family has also taught me a lot about being understanding of other people too. This place truly is a god-send and I'm so thankful for it.

Alaura- Thank you so much for the encouragement and the hugs! I can't wait for my appointment tomorrow with Dr. N. I know he'll have something up his sleeve. Praying his wife doesn't deliver tomorrow!

Rebecca-Thanks for your perspective. It is always helpful to hear how other people think and it gives me more understanding.

Peggyann- Thank you so much for your support! It means so much to know you all care so much.

Meli-Thank you for the hugs! I need them! The puppy therapy is going great. It is one of the things in my toolbox that I couldn't live without! And our new dog, Zoe is already an expert at cuddling!

Kelly

Kel, I sure hope Dr. N has something magical up his sleeve. I know how difficult it can be trying to function while being in so much pain. I don't think people understand that the pain never lets up and trying to behave normally while being in so much pain wears you down. I get so tired of doctors who say you're depressed and what to throw an antidepressant at you. Of course we're depressed. . . we're in constant pain. That would make anyone depressed. Before throwing something at the depression, let's work on the lessening the pain and see how THAT affects depression! They don't seem to want to working on "fixing" things, just hiding the symptoms.

Let us know what Dr. N says tomorrow. In the meantime, always know you can vent here and get emotional support here. WE UNDERSTAND HOW YOUR FEEL and won't blow you off.

Take care.

Teri

Hi Kelly FWH, I know what you mean about wanting to carve your head and also just wanting validation that you are really sick and hurting. It isn't something anyone that hasn't experienced chronic pain understands though. So many people are well meaning but don't think a problem is a issue unless a hospital is in the picture.

Then there are some people who will make it a regular habit of going to the hospital to visit, expecting to cheer a sick/convalesent patient. These same people though maybe the ones who turn around and think you are faking, tell you to buck up, or are at lost to realizing that pain is a 24 hour issue for you. After all if it was real you would be in the hospital.

I VALIDATE THAT Kelly Fly With Hope is suffering from horrible, unrelenting pain. I am so sorry that you hurt.

Hope that the Doctors, will helps you break this pain right now.



Mary in NM

Teri & Mary, you are fabulous. What each of you said warmed my heart and made me feel so understood. Thank you both so very much.

I'm updating how I am here...cause the title is still true, I still want to carve my head like a pumpkin.

I saw dr. Nissan yesterday. The drive was not good, but anyway. I love going there b/c the staff knows me and are so friendly. Even though I feel so rotten, I enjoy seeing them.

After discussing and looking thoroughly at my headache diary ect, Dr. N feels like I kind of hit a perfect storm with the events that have happened in my life to bring me to this really bad cycle of Migraines. So, the good news is that once we break this hopefully I'll be back on the improvement road. He also commented that it seems that when my body gets hit, it falls hard. I thought that was an interesting observation.

We're increasing one of my preventatives, Gabitril. He gave me thorazine to try by mouth to try to break this Migraine. If it doesn't break it by the end of the day today, we arranged that I'll be going in for IV infusion. (His wife is scheduled to deliver their baby today so he's going to be out for 1 1/2 weeks. I'm really glad he wrote a plan for treatment in my computer record.) I was feeling so rotten,t hat I didn't think to ask why not do IV infusion first, but anyway. I know to ask for it next time. THe iv infusion option is a new thing they are doing.

He gave me double the dose of a benadryl shot (100mg) while I was in the office and that was a trip. The dose that I take at home (50mg) always knocks me out...so the 100mg really did me in. At least I was asleep for the ride home in traffic!

Gotta get off of here cuase my head isn't liking the computer, but I wanted to update somewhere so that you all knew what's up. My head is still rotten and I'm just taking it one moment at a time.

Thanks for reading.

kelly

Well, I'm going in for IV infusion tomorrow. Not sure how many days or how long or even what, but I am glad. I'm really hating the side-effects from the Thorazine and benadryl. And I'm feeling other side-effects from increasing the Gabitril. I just wished the rescue meds would've knocked the beast out of the park. But now I've got Migraine plus yucky med side effects.

I am a bit scared. I'm not sure what to expect because Dr. N won't be there. And I'm so sensitive to meds...I just wish there were an easier way.

Also, DH is really stressed. I mean, three is a lot happening and he's really weighted down by everything he's trying to juggle cause I can't take care of it. And now that he's going to have to drive me to the city and take tomorrow off of work...I mean, he wants to, but it is a lot for him. He is the most caring/giving/self-sacrificing man I know and I hate it that it how it is right now, for both of us.

And on top of this, we'd planned on going to visit his parents for a week or so starting this Friday and our plans are going to have to change because of me. I know everyone is understanding, but it still stings to be changing plans.

I just want to feel better. And...maybe I need some hugs.
Thanks for reading.

Kelly

Virtual hugs coming your way, Kelly. Hope the infusion helps the head pain. As for the plan change , but your health needs to come first and DDH and Din-laws probably want more than anything for you to feel better because they care so much for you.

Keep flying with hope



Mary in NM