Kelly, over at Fly With Hope is doing an amazing series this week about migraine and suicide. (She also talks about how those with chronic illness, and chronic pain are in crisis.)
In her words:
“My goal is to decrease the stigma of the discussion of suicide so that we might be more supportive in the chronic Migraine/chronic pain community on this issue.”
“Please check in every day as there will be posts with (anonymous) contribution from the chronic Migraine and chronic pain community on topics related to chronic Migraine/chronic pain and suicide including how to cope when you are close to the end of your rope, personal stories from those who have been there, on suicide and faith, a post especially for loved ones (family, friends, caregivers) and links to other blogs/articles on Migraine and suicide.”
One of the contributors to this series is me. I don’t mind anyone knowing, and some of you may recognize that it’s me when you read it.
Please know, if you are ever in that state, if you ever feel like you just can’t cope….or even before you get there….Please feel free to get in touch with me. Email me! I will gladly give you my phone number and we can chat….or if I’m not hearing well, we can IM or text. Just know you are not alone.
I’m a firm believer that everyone with a chronic illness should have counseling. We need to be better equipped to deal with our situation. My husband and I see a therapist together. It has made this intolerable situation, much more …well…tolerable.
But if you need a friend to talk to…I’ll always be here. Many of you have touched my life in such a way I couldn’t begin to put words to it. After such warmth, love, and compassion from so many of you…I have promised to always be there for those who need me.
Again, please check out Kelly’s blog this week, this should be a very moving series. Kelly has chronic migraines, and Meniere’s.
I really over did it on Wednesday, it was a good day, but I’ve paid for it. Would I do it again? Yeah, probably, you never know if you’ll get a different outcome! Yesterday, I was sore all over and had a nagging headache. I did take some Diamox, but not a lot. I’m still a bit afraid of that stuff.
Blinding Headache (image, property of Wendy Holcombe)
Guess, I should’t be so afraid of it! Today, I woke up with a headache so severe I couldn’t stand up by myself. No matter what I took, it would not get better. I was super nauseous. This is the first time I’ve ever considered going to the hospital because of a headache. Usually, I think…if I just take a little more medication, and can fall asleep things will get better. Nope, not so much.
Finally, Stuart talked to Dr. Gray for the 3rd time today, and she said to prop me up, so my head and shoulders are raised. (she actually said for me to sit up first, but I was way to nauseous.) After sitting up about 20 – 30 mins, I started to feel so very much better. So my pressure had spiked again! I will have to stay on the Diamox a bit longer. I don’t like that. I’ve been struggling with low pressure cerebrospinal fluid for a long time, now I’m taking a drug to lower my pressure…crazy. I’m petrified I’ll end up taking too much and making myself have an attack because my pressure is too low. Plus, I really hate the side-effects. My hands and the heels of my feet tingle, and I feel really stupid. Everything, seems dull.
I don’t like it.
Tomorrow, is our 7th Anniversary. We had planned to go out for a romantic dinner…those plans may change. I think a Couch Picnic…as mentioned on Maureen’s blog, Sunshine and Chaos, may save the day. : )
I thought everyone would appreciate that the only damage we received from Irene, was that our wild flowers are now on the ground. I must say, these flowers have grown completely out of control. I just planted a bunch of mixed wild flower seeds in this area, they were supposed to range in height from 6″ – 24″. We have some that have passed 3 feet high, and are close to 4 feet. I guess I should say, they were…now they are leaning quite a bit, and covering our walk way. I’m so relieved that we have been spared both the tornado, and the hurricane that has come through out area in the past few months. (Did feel the earthquake, but we used to life in California, we just thought it was weird here.)
Now…on to the story of A Pretty Good Day:
Today I woke up and was excited because Stuart mentioned if I felt alright we would go to the grocery store.
Yes…that sounds sad, but getting out of the house…heck, getting out of bed isn’t something I’ve done in a while. As of last night, I’d been out of bed about 4-5 hours total since Aug. 22nd. 8 Days. Wow. (and those hours were spent on the couch.)
Well, I decided to take on much more than the grocery store, I wanted to go to Michael’s – the Arts and Crafts store. I had the desire for new art supplies, and a new sketch pad. Since I’ve been doing so much more art, I needed some new stuff. I got 2 sketch pads, one has 90 lb. stock paper (this means it’s very thick and you can use watercolor on it.) The other is just a sketch pad, about 50 -60 lb. Not sure exactly, I found it in the Bargain Bin at Barnes and Noble. So yes, I went to Michael’s, Barnes and Noble, Target, and Earth Fare. We even ate at Earth Fare’s hot bar (Earth Fare is like a local…well, NC based…Whole Foods.)
I got new pencils that are so cool. They are called Inktense by Derwent. They are like watercolor pencils, but they are ink based. Hard to describe, but you can draw with them just like colored pencils, then if you add water, the color gets vibrant, and very…well…I have to say it Intense. I’ll be posting a drawing I did with them on my other blog Create to Heal. If you are interested.
I feel like I easily walked a couple of miles today. I over did it. When we were walking around Target I know people thought I was drunk. I kept losing my balance, and my words were not coming out right. Stuart kept asking if I was alright, and I said I was….and I felt that since I understood I wasn’t quite right, then I was alright enough. I explained this to him, and he seemed to take it in stride. (remember, when he had his “episode” he thought he was fine, and he was…oh, so NOT.)
So great news today. Minor nagging headache, haven’t needed to take any Diamox (the drug that lowers your pressure, and has icky side effects). Off balance/disequilibrium a lot, but no spinning. My hip/back/and knees all hurt….oh and so do my feet. I’m sure the hip is going to yell at me tonight when I’m trying to sleep. I’m going to get in a hot bath very soon.
Yesterday I published a series of photographs that I manipulated to show the intensity of my headaches. I think some of you might like this: Translating My Headaches Into Images.
I’m sorry to see the summer coming to an end. At the beginning of this summer, I had such hope, so many plans….and no frigging idea I’d have to have 2 CSF procedures!! Well, look out Fall, because I’ve got a lot of making up to do!
After all the warnings from previous procedures that my pressure could spike afterward…and it didn’t…well, I thought it just wasn’t going to happen to me.
Ummm. WRONG!
My pressure spiked, and my head has been killing me. I’m taking Diamox to lower my pressure, and that scared the bejebez out of me. (No, I have no idea how to spell Bejebez but if you use phonics, it sounds right…doesn’t it?) Any way, I’m petrified that I’ll get my pressure too low, and start spinning and all of that mess.
I’m having the weirdest tinnitus in my left ear. Sounds like a rail road train, (sometimes), other times, it sounds like a very loud squeaky swing….and just all kids of things…but that’s not the weird part. It changes if I put my hand near my ear. If I touch around my ear, it gets louder! And if I hic-up (which I seem to do very often), it has a very loud DING-DONG. Driving me insane.
Think I may have taken too much Diamox yesterday (Dr. Gray was pretty vague on how much to take, take it until the headache stops. Up to 1500mg at one time…notice not in one day…but at one time.) Feeling kind of lost there, but since I couldn’t actually talk to her, well, Stuart doesn’t think to ask some things. But yesterday, the world was spinning, I was amazed I wasn’t throwing up. The world was really moving!!
My usual spot for the past week. Lots of love surrounding me.
I’ve spent the last 6 days in bed. Well,, I tried to get up to the couch a couple of times…so I was probably up for about 3 hours total.
I feel so helpless. Stuart usually has to help me get to the bathroom…even pull my pants down…how humiliating! And then the most humiliating thing…and I really thought I was better about this…is when he has to give me a suppository. I just feel so …. dependent…helpless…and just icky. When your husband sees you naked, it shouldn’t be to put medication up your butt! Or help you go to the bathroom! Yuck.
I feel like I have some terminal illness, and I’m just waiting to die. It reminds me so much about taking care of my mother when she was so sick. I know she never planned for her daughter to have to do private things for her.
And to top it all off, my hearing aid BROKE! For the second time!
You may remember this picture below when I was showing off my new hearing aids:
The one on the left, is the one that keeps breaking.
For the second time now, I was cleaning my hearing aid, just rubbing it gently with a tissue, and the little part that holds it in your hear, has snapped off. I’d only had the second hearing aid for about a week. I’m so ticked! I’m asking them to make me a new one out of the same stuff the right one is made from. It is a much sturdier material. The clear plastic, just cracks, like old dried up plastic does. It’s so strange. I’m getting a hearing test on Sept. 6th, and they will order the new hearing aid then. (I think they have to make a new mold for this type of insert.)
I think that’s all for today.
I did want to mention, If you liked seeing and hearing about how my art has been helping me through all of this, I started a new blog that just talks about that. It’s called Create To Heal . Come see me, let me know what you think. Join me in my journey. Create Art. Have Fun. Feel Better!
This is a photo post of the procedure I had done on Aug. 22, 2011.
If things like this my disturb you, or if you have an aversion to needles, please do not look.
I’m publishing this, solely for those who have a curiosity about this procedure, and for my own prosperity.
I apologize I do not have any photos of the Lumbar Puncture, or the Myelogram. I didn’t think to ask my husband to start taking pictures until we were at this stage.
1 - Marked Areas where Needles are to Enter.2 - Apply Pressure (the CT scan lines up where to enter, and they take pictures the entire time they are working on each spot)3 - Lidocaine4 - Needle Remains5 - CT scan of previous image. upper right - can see needle in inside.6- Needle remains after first adjustment.7- upper left - where needle was upper right - where needle is after last adjustment.8- More adjustment9 - upper right, where needle is after last adjustment.10 - Final Adjustment11 - add contrast dye.12 - can see contrast on image13 - adding Tisseel. (a Fibrin Sealant)14 - Tisseel being added. Can see pushing the contrast deeper. They put contrast in so they can see where the Tisseel is going.
This series is patching one leak. This had to be repeated for each of the 7 leaks they patched.
Please remember I’m on my face the entire time. I did not see this procedure until I was able to see the photographs. We are relying solely on my husband’s memory for the descriptions. Please forgive us if something is slightly off.
Also, these photos were taken with his phone, so please forgive the quality.
(He was a bit more concerned about what was going on with me, instead of taking notes on the procedure. I keep telling him, that he can do both…but somehow, he just doesn’t believe me.)
I hope you enjoyed your little snippet of my day at Duke Medical.
Thank you to Dr. Linda Gray Leithe and her wonderful team for allowing us to take photos, and for taking such wonderful care of me.
Yesterday I arrived at Duke Hospital at 7:30am (after just 3 hours of sleep the night before…I am NOT a morning person!)
Got in my hospital gown, got my IV in place (of course the girl didn’t listen to me and tried to stick me where I knew she wouldn’t be able to get a vein…yes, I know it feels like a nice vein, but it’s deep and it rolls out of the way…every time!) I told her exactly where to stick me, she said, those veins don’t like to cooperate. I mentioned, this was my 5th time having this done. After, botching the first try (thank you very much for the nice big bruise) she tried where I suggested. Got it, no problems. Hummm, would be nice if they listened wouldn’t it?
Talked with Dr. Gray. Decided if my pressure was low she would do another myelogram, and more patches.
And that’s what happened. My pressure was 17, a little higher than last time, but still low..for me. I had a headache, she added some CSF, and voila, it went away! Just like that…strangest thing, I just can’t get over how that feels.
I was then given a myelogram (that gave me one heck of a headache, luckily, they had nice pain meds on hand for me.)
Then I was patched in 7 places. Most of them in my mid back, one lower.
Marked for CSF patches.
I did ask Dr. Gray why some of the punctures were so far away from the spine. She said, “The reason the needles are out farther is that they are directed to the area around the spine but the anatomy is such that in order to negotiate the transverse processes you have to take a steeper angle, farther out from midline.”
She will compare the old myelogram and the new myelogram and let me know if these were new leaks, or if the patches on the old leaks haven’t been holding. That is the BIG question! From there, we’ll have more questions….if new leaks, why? will I continue to get new leaks? how to stop it? If old leaks, why isn’t the sealant holding? how can we fix it?
I have lot’s of pictures. Some play by play action of getting patched up. I promise to post them soon. Hopefully, tomorrow.
Today, I have a dreadful headache. My pressure may be spiking, getting used to not having the leaks. Taking meds, but it just doesn’t seem to be touching it.
The procedure went well, very minimal pain. My back doesn’t hurt hardly at all now.
Am trying to be cautiously optimistic. (but really, everything is going to be great, isn’t it?….oh, please. oh, please..)
I mentioned in my last post that I’m dealing with some anger issues.
I’m not talking about getting a bit upset here and there, I’m talking about some deep seeded resentment. Something down in my gut that is just eating away at me. Perhaps that is a bit strong…but I wanted to make a point.
I’ve been snippy, grouchy, teary, snappy…. Oh, let’s just say it, I’ve been a bitch lately.
Not all the time, at times, I’m a perfectly likable me. Positive, light hearted, smiling, laughing… Then unexpectedly, something will hit me in just the wrong way, something that normally wouldn’t mean anything, and I want to explode.
Finally, I tried to take a step back from the situation. And ask myself, what are you REALLY mad at. I’ve come up with a few things, some I bet you have felt at times, others may just be me. I don’t like being like this. I try very hard to keep a positive attitude, to believe things will work out, to understand that even if they don’t, I will survive. No, not just survive, I will thrive!
It has been hard lately. Spending almost every minute lying down. Having horrific headaches, hearing things that aren’t there….well you all know what I’ve been going through.
And that my friends is what, I believe, I’m mad about!
I don’t want to sound petty, or ungrateful, or as if I don’t have hope. This is just anger. It may not be totally justified, and it’s not fair that I keep snapping at my husband, but it’s there, and I felt like I should discuss it. (perhaps giving it a voice will help it to go away.)
I’m MAD…
that I’m not cured. I know I kept saying that I understood that this was not a “cure”, that I know I still have Meniere’s Disease, and that I could handle it if my symptoms returned. That this procedure gave me hope, and I would cherish every moment I had as a “normal” person. (I’m not saying that those feelings have changed. I still feel that way….but I’m still angry that it’s happening…and I don’t like myself very much for saying that.)
that I thought this was over. I don’t feel that I was being as realistic as I should have been. I’m not sure I was being honest with myself. I knew the possibilities it could happen again, and I would need more treatment…but I don’t think it really sank in. I put those thoughts aside and thought about the future…for the first time in a long time.
that I don’t feel I can plan for the future any more.
that I’m scared.
that I can’t do things I need and want to do.
that my house needs to be cleaned.
that Stuart has to do everything, and I keep getting angry with him when things aren’t done. Or done the way I would do it. How can I get angry at him for this? Or am I really just angry because I can’t do it?
at my friends, who haven’t gotten in touch, who haven’t offered to help…the most I get from most is a quick note on facebook. I know this has been going on for a long time, I know that my friends have lives and responsibilities. I don’t blame them. But I’m still hurt, and angry. I don’t want them to feel bad. I don’t know what I want, or expect. I have 2 local friends who really keep in touch with me. 1 emails me often, 1 often chats with me on line. (and I know he would be over to see me more often if he wasn’t having troubles of his own right now.)
at my family. Who have never offered to help in any way. (I must put in here, that I didn’t expect it.)
when I read about others who have so much more help. Who have friends who bring them dinner, or family to come stay with them for a while, or someone to just sit with them. (again, don’t get me wrong, I am so very grateful for what I do have…especially my husband) But I am hurt, and disappointed that I don’t have more people who reach out. And I’m mad at myself for being jealous of those who do.
Oh, I’m certain I could go on and on, but I’m sure you understand by now.
This anger isn’t deserved. It’s not even real in some instances. I think it’s mostly about the situation. I don’t want to be in this situation, and it makes me mad. I don’t want my husband to be in this situation, and it makes me mad. I don’t want to have my life on hold, and it makes me mad.
I’m trying to write this objectively, and honestly…but I’m not sure those two things go together right now.
When I got so much better after my patches in January, I started to see my friends at gatherings and things. At first it was very hard. I was angry at them. It’s hard to explain. These people mean a lot to me, but I felt like they forgot me when I wasn’t able to do much. Most didn’t ask Stuart if he needed anything. Even when I would reach out and say exactly what I needed, I usually didn’t get it. (I’m not talking about big things here, I wanted contact, emails…anything) As I said before, I understand that people are busy, they have lives, and it’s hard to deal with a friend who has been having health problems for a long time, it’s not like it’s something that just goes away after a visit to the hospital, or one time bringing a caserole…this illness lasts…well, a life time. Finally, I was beginning to feel better about things. We would go to parties and I felt that I could mingle, and talk with people, and not feel that under current of anger. I don’t want to feel like that again.
I am overwhelmed by everything that is happening to me. In just the past 2 years my hearing has gone from some hearing loss in my right ear, to severe hearing loss in both ears. I just got hearing aids in March, and I can barely hear out of them now. When I don’t have my hearing aids in I can barely hear myself talk. I realized I was screaming at Stuart the other night because my throat started to hurt.
But at times, for short periods of time, I can hear better. So I don’t know what to do about the hearing aids if my hearing is fluctuating so much again. (I’ll see Dr. Kaylie next month, I’ll ask him then.) Of course, I’m hoping that after seeing Dr. Gray I will have some answers and my hearing will improve again.
This hearing thing makes me so mad! Partially because of losing my hearing…but not really…I think I’m handling that pretty well. But because having my hearing drop has always been a sign of a Meniere’s Vertigo Attack coming on. So now, I’m constantly on alert. I’m so jumpy, and jittery. Every time I move my head and get a bit off balance, I’m convinced I’ll be spinning soon. Or, I start to get used to it, and start to ignore it, like I did the other day…and I was almost hit with a full blown attack. (yesterday, was more of the same. Lot’s of mini-spins.)
I am trying very hard to deal with this anger.
Dang-it! I’ve had some crappy stuff happen lately, and I’m pissed!
I’m also trying to come to terms with it. To feel some of it and not bury it. Just writing this helps. Now I hope I can deal with it, and move beyond.
But, I’m also very grateful that if this was going to happen, it did it now. Before we brought a child in to our lives. I’m grateful, that I have good doctors who really care, and will do all they can to help me. (I just wish I could have gotten in to see them faster. – and yeah, I’m pissed about that too!) I’m more than grateful for my loving husband, and all that he does. I just wish I could help him more, or get him some help.
I also want you to know…ALL OF YOU…how very much you mean to me. How much your encouragement, and caring words have helped me through many a rotten day.
**I saw a post on Fly With Hope today, and I thought, “Yes!, that’s what I wanted to say!” http://flywithhope.blogspot.com/2011/08/less-bitter-more-thankful.html Thank’s Kelly, I needed to hear this. I’m feeling more thankful already. I promise I will not let this anger fester and become unrelenting bitterness.
I realize that it stems from the situation I’m in right now. But, that doesn’t help much.
I hate feeling angry.
So I decided to be very silly!
Purple nails with bright green polka dots!
One good thing about not being able to do anything for…has it been over a month now? Dang! Oh, back to the good thing, my finger nails look great! I mentioned this to a friend of mine, and he suggested purple polish….a few days later, I added Polka Dots!
Now, you know it makes you smile to think that a 48 year old woman has Purple Finger Nails, with Bright Green Polka Dots!
**Note – my husband said that it didn’t surprise him at all. Just as the orange hair didn’t surprise him. “It’s just you!” He also warned that if we ever are able to foster, that our child will think he or she has a really strange mom. I disagree, I think they will think I’m a really cool mom! (yeah, right…how many kids really think their parents are cool?)
I’m finding the drawing journal to be very therapeutic.
Day before yesterday was a very, very bad day. I was awakened by one of the worst headaches I’ve ever had. The lower part of the right side of my skull, and down my neck was…well, I can’t think of a good adjective…let’s just say, I was in a huge amount of pain.
Throughout the day I kept trying different meds to see if anything would work. They sometimes made it better, often not. I was nauseous, and just miserable. That afternoon, I turned to look at Stuart and the world moved. I felt all the symptoms of an attack starting. The world was off-balance, but not completely spinning yet, I got HOT, I didn’t feel like my head and my body were listening to each other….I told Stuart…”It’s coming!” He ran and got my medication, some cool wash clothes, and trash cans….he was getting prepared. I’m happy to say the whole world spinning part didn’t happen, I didn’t throw up…but I was amazed when it started to calm down and didn’t become a full-fledged vertigo attack. (I have a question, anyone else out there who has these attacks, when it first starts to you really have to go to the bathroom…bad? Every time it starts, I have to go! I don’t want to get up and move to go to the bathroom, I just want to stay as still as possible…but I can’t I have to go!)
For the rest of the day, the tinnitus was very loud, my head hurt, and I was exhausted. I had to use my walker. (very strange thing I’ve noticed, a lot of time when the tinnitus is at it’s worst, I can hear better….isn’t that the strangest thing you’ve ever heard?)
I’ve decided that I have an Evil Goblin living in my Head! And he looks something like this:
Doesn't he look Evil?
These are his torture devices:
Look Familiar?
Here’s another sketch of my Evil Goblin (the original looks better. I didn’t realize photographing graphite was so hard.)
face of the Evil Goblin in my head.
I hope you have enjoyed a view in my head.
Wanted to let everyone know that my appointment with Dr. Gray has been moved up to the 22nd. I’m still on the cancellation list and if anything comes up before then…keep your fingers crossed.
Illustrated journals can be so interesting…and inspirational. Here’s the beginning of mine:
Decided to draw what I could see.Having a Bad Balance Day. Thankfully, the net will catch me. (today my net has been Stuart, thanks hon)
The past two days I haven’t been able to hear much at all. The tinnitus has been better, and the headaches have been less intense…but hearing…well…not so much.
Today, I had a mini-attack. I felt it coming. The world was starting to move, my stomach was doing flip-flops, I had that hot feeling….I just knew things were going to start violently spinning any moment. Stuart kept a cook head, as usual, I was a little panicked, but worked hard to stay calm. After taking Valium, and Phenergan…plus a phenergan suppository…things calmed down. I’m still off balance, and not trusting myself to walk without my walker. But I didn’t throw up!!
I hope you enjoyed my illustrations. It felt good to accomplish something, even though I couldn’t get off the couch!
Picnic with Ants 