Migraine Madness

On May 5, 2016May 6, 2016 By WendyIn Chronic Illness, Meniere's Disease, Migraines, Pain27 Comments

headache guide 1a — My migraines are never under a 6, the average is a 7.5. 10 means you go to the Emergency Room. Unless I was dying I wouldn’t go to the ER for a migraine. I do not think they could help, and I do not want to labeled a drug seeker.

This post is personal. No links to studies to back up what I’m saying. Nothing more than what is happening to me.

On March 22nd I had a migraine. Every day since March 27th, except 1, I’ve had a migraine. Yes, I’ve had a migraine for 43 days out of 44.

This is not a medication rebound headache. I have not taken medication for more than 15 days in a given month.

Can you imagine the days I haven’t used medication?

When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds. I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.

I’ve gone through a DHE protocol of 3 shots for 3 days. During this time was the day I didn’t have a migraine. I still had a headache, but it wasn’t a migraine.

Why is this happening to me. Well I have a guess, but I don’t really know.

After I had my seizures my Neurologist told me that Topamax can cause seizures in some people. This medication is used to prevent migraines, but it is also used for seizures. So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy. Our mail order pharmacy didn’t fill my prescription on time. They had a problem with the prescription and didn’t tell anyone. Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.

So I ramped down and got off the Topamax and the seizures stopped. I was off of the Topamax for less than a month when these migraines started. I normally have about 15 migraines a month, some months a little more. Very few months have I had less than 15. I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did. Right now I’m so ready to go back on this drug. If I have a seizure I’ll stop it. (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.) Unfortunately, I kinda doubt my doctor will be willing to take this risk. Maybe there will be something better.

Today my neurologist called in another medication for me. I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days. (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)

If this new medicine regimen doesn’t work I don’t know what the doctor will do. I’m lucky that my neurologist specializes in headaches. She actually runs a Headache Clinic. I’m confident we will be able to get these migraines under control. She won’t give up.

During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought. I do question if this vertigo was Migraine Associated Vertigo (MAV) . I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not). Rotational vertigo is by far the worse. I had a bought of that yesterday, but it wasn’t too bad. The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever. Yesterday could have been MAV, I just don’t know. It was a very bad day. I woke with a Migraine at 9.5 on a 0-10 scale. This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo. I’m leaning toward Meniere’s because my hearing was way off all day.

Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo. I’m not sure why the rotational vertigo has calmed down, but I’ll take it.

I haven’t been around so much this past week, because the pain is getting to me. I’m falling into Migraine Madness.

So, all my ramblings lead to one thing. My head HURTS.

Update On My treatment

On March 17, 2016 By WendyIn Chronic Illness, Cochlear Implant, Deaf, Meniere's Disease, vertigo, Vestibular Illness14 Comments

dandilion flower

My treatment for vertigo as laid out by the doctor at John Hopkins was to continue working with my migraine doctor to get my migraines and migraine associated vertigo (MAV) under control, go to vestibular rehabilitation therapy, and to have gentimiacin injections (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere’s disease).

As you might recall I wasn’t thrilled with the doctor I saw in our city, and was not going to allow him to do the gentimiacin injections. However, he did send me to vestibular rehab.

I’m still seeing my migraine doctor (a neurologist who specializes in headache pain), we are working on getting the migraines under control. I can’t say I’m having fewer migraines but they do seem to be less intense. It’s hard for me to tell if my vertigo is caused my MAV or if it’s a Meniere’s attack. (If the vertigo is caused by MAV then gentimiacin will not help.) You may recall that I had seizures in February that caused me to be hospitalized. My neurologist told me that one of my medications, Topamax, which is actually used to control seizures, can sometimes cause seizures. It appears this may have been my problem. I’ve since stopped taking Topamax and the seizures have subsided.

The vestibular rehab is going well. I haven’t been to a lot of sessions yet, but so far so good. When he did the initial intake exam he found I have still been having symptoms of Benign Paroxysmal Positional Vertigo (BPPV), and he treated it with the Epley maneuver. This is something that the doctors I have seen ignored, the nystagmus (involuntary movement of the eye) is very slight, and the doctors didn’t see it, however, I felt like they didn’t believe me. (I can’t remember if I mentioned these symptoms to the doctor at John Hopkins so I can’t say he ignored them.) After this treatment I have had very little BPPV symptoms. On the way home from the first visit I had a bad vertigo attack that last hours. Since then my treatments haven’t caused an increase in my symptoms after leaving. During the treatments I often get a bit overwhelmed and wonky, but Ryan watches out for this and makes me take a time out. I still have a few sessions to go before being reevaluated.

Now, about the doctor situation. I will be seeing a new doctor on the 22nd, next Tuesday. It’s kind of amazing how I found this doctor. Advanced Bionics (AB), the company who makes my cochlear implants (CI), are going to have an event talking about new products just right down the street from me on Friday. When I was sent a notice about it I decided to email to the AB representative for our area and discuss some of my issues. I told her about how difficult it is for me to hear on the phone and wanted to know if they had a new product to help better with that. They don’t, but I we both think most of my troubles there is lack of practice, since she has been a speech therapist for years she gave me good exercises to try to get me used to the phone.

I decided to tell her my predicament with not being able to get my CI’s program updated (called mapping) here when I have problems, even though there is an office that provides this service. (they will only map CI patients who were implanted by their office) As luck would have it, her husband works for this medical group. He is an otolaryngologist. He is new to the office and is working to get things better there. He gave me suggestions about things and I decided to tell them about my problems with the doctor I’ve been seeing. He told me he would be happy to take me on as a patient, or he recommended another doctor in the group. He just wanted me to have a good experience there. Wow. I decided to go to see him. He is very willing to confer with the doctor at John Hopkins. He is also going to work to get my CI’s mapped at that office. Their rule is so people won’t go to a hospital just a few hours away and then expect them to do the follow up work. I think it’s more complicated than that, but that’s a big part of it. The big issue with me is that I wasn’t living here when I was implanted so I should be able to be seen there. Is that just a lucky thing or what? I’m so happy I reached out to her, you never know who may be able to help.

How am I feeling about my treatment? Good, so far. I’ll discuss it with my new doctor, but right now I think I’m going to put off the gentimiacin injections. I’m doing much better right now and I just don’t want to take any chances that the vertigo is coming from my migraines. I have been thinking we may as will have the injections in the ear that registered a 4 on the caloric testing. (the normal reading is a 21). Since it’s that far down I want to know if it could help to go ahead and do the gentimiacin. We’ll see what he says on Tuesday.

So, that’s where I’m at right now. Very grateful everything is going so well.

dandilion puff

The Crud

On March 6, 2016March 6, 2016 By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease27 Comments

sick cartoon

The chronically ill get sick, just like everyone else.

I have the crud. A sniffling, sneezing, aching, coughing, stuffy-head, fever, so I can’t rest cold, and unfortunately NyQuil doen’t help.

When you have Meniere’s disease you can get really sick when there is too much fluid in your head. I haven’t talked to anyone who has Meniere’s Disease who doesn’t have more symptoms when they have a stuffy head. No one knows what causes the symptoms of Meniere’s one main theory is that they result from increased pressure of an abnormally large amount of endolymph (fluid) in the inner ear. Doctor’s usually put us on a low sodium diet and often diuretics to reduce the fluid in our ears. When anyone has a cold they have a lot of fluid building up in their head; their nose gets all stuffy, and their ears can feel full: put that in a person with Meniere’s and you have one wonky person. Right now, I’m one of those people.

Nothing I can take can make all that fluid go away. Yes, I can take a few things to help “dry things up”. but I’m sure all of you have had a cold, and you know that no matter what you take you will feel a bit stuffy and all full in the head.

My symptoms are exacerbated.

My tinnitus is going crazy, as I’ve said to Stuart: “Really? You Can’t Hear That??” The noise will be so loud at times I could swear my body is vibrating with it. Other times, the pitch is so high I will suddenly buckle over from the pain.
The fullness in my ears feels like there is wet cotton in there and it just keeps absorbing more and more fluid, soon it will be dripping out my ears I’m sure. (this won’t happen unless I get a bad ear infection, it just feels like it.)
I feel much more dizzy and lightheaded than normal.
My hearing is just wrong. I have cochlear implants, I don’t hear like other people. “Cochlear implants (CI’s) bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.” NIH Publication No. 11-4798 You wouldn’t think that I would have the same problems as other people with Meniere’s concerning hearing fluctuation and sound sensitivity, but I do. It is much worse when I have the cold, but it happens pretty much every evening, I’ll suddenly have my hearing so all funky; I can’t understand Stuart and often things sound so loud that I have to remove my CI’s. Thankfully, I can take them off and just hear nothing, except the tinnitus that doesn’t go way, but hearing nothing can cause other problems. When I take off my CI’s and stop hearing anything, I can get dizzier, and feel really confused. I don’t mean I’m confused because I can’t hear, I have severe brain fog. If I’m reading, I often can’t comprehend what I just read. I think this is because I notice the tinnitus so much more and it is bombarding my system. When I’m not sick, sometimes taking my CI’s off is often a pleasant sensation, to just relax in total quiet (as long as my tinnitus is being good and staying low). I do this every day when I meditate.
My oscillopcia is worse. (Oscillopsica is a visual disturbance in which objects in the visual field appear to oscillate. The severity of the effect may range from a mild blurring to rapid and periodic jumping.) It can be incapacitating, luckily mine just causes me to see things weird sometimes. I often see things as if there is this funky shadow surrounding them, like they are slightly vibrating but I can’t really see the vibration I can only see the after image after. It’s hard to explain. On a good day, I don’t have this, or barely have it. Today, I’ve had to stop writing this post many times because I am having a hard time focusing. (note, not everyone with Meniere’s has oscillopcia)
I think everyone has a headache when they have a cold, I don’t know if mine is worse than it used be before I got Meniere’s or not, that was a long time ago. I know it’s worse than my persistent daily headache. I’m at a 6 or 7 on the 0 – 10 scale all the time right now.

So far I haven’t had a full blown vertigo attack. I keep feeling like it’s coming, but it hasn’t. I’ve been having so many good days recently maybe this cold won’t set it off. I do constantly feel like I’m on a boat and a bit car sick, but the full rotational vertigo has not come around.

Having a cold and Meniere’s at the same time can be challenging.

If you have Meniere’s and you feel cruddy because you have the crud, you aren’t alone. Know that it gets better.

If you don’t have Meniere’s, now you know a bit about what people with Meniere’s go through when we have a cold. Some people have more symptoms than I listed, some people have less, but normally people with Meniere’s have their symptoms increase when they have a cold.

Today I have the crud….it just is.

My Visit to John Hopkins

On December 14, 2015 By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness16 Comments

A couple of months ago I applied to be seen at the vestibular clinic at John Hopkins Hospital. My records were sent, and an appointment was set up for December 27th, then it was moved up to December 11th. I must say, that was just fine with me.

I was scheduled to have a hearing test, and an Electonystagmography (ENG) test before seeing the doctor, but the doctor had to leave at 2pm (before my original appointment time) so he wouldn’t see the test before he left, so we asked if I could take the test at home. You see, I had to stop any medication that might help with vertigo attacks before the Electonystagmography (ENG) test, if I didn’t have to stop these medications while out-of-town, I sure didn’t want to. They said no problem, and I sure was glad. I spent all of Thursday with vertigo, it was slow but it was there, I can’t imagine what it would have been like if I hadn’t been able to take my meds. I also had an attack right before my appointment on Friday. I had very little balance when I saw the doctor and my vision still wasn’t clear. So he saw me when I was not doing well. I think that’s a good thing. How many times have you been to the doctor and all of your symptoms just magically disappear right when you get there? That is so frustrating.

When we walked into the Outpatient Clinic it was like walking into an airport. You checked into the front desk, we both got arm bands to prove we belonged there. There were all kinds of signs and lines and directions, it was a bit to take in all at once. Stuart said we were told where the elevators were (no I couldn’t hear much in there) and off we went. When we got where we were supposed to be, I was very impressed that the check in and out areas were looped. If you don’t have hearing aids of CI’s you won’t understand that. If your hearing aid or CI has a telecoil setting, then the hearing loop provides a magnetic, wireless signal that is picked up by the hearing aid or CI when it is set to ‘T’ (Telecoil) setting, and the person using that setting can hear the voice right in their ear, no background noise or anything…it is really cool. So, we checked in and were told to go to the little waiting room in the back….that’s when it started to look like just a normal hospital setting. The little waiting room, wasn’t all that little, but it wasn’t all that big either. We were early, because I HATE to be late. My first appointment was to get a hearing test…(snicker). But soon a very soft spoken woman came out and said the doctor wanted to see me first, at least that is what Stuart told me she said, I had no idea. She took my vitals, she asked for my weight and height…I got it mixed up as to which one she asked for first, because I couldn’t hear her and I was guessing. Soon the doctor came in…..

We talked a bit about my history and he gave me some tests while in his office. A bit of touching my finger to my nose and then to his hand, turning my hand over and over….ect. Some I could do okay, some I had trouble with. Then he said he was sorry but needed to shake my head a bit. I did not do well with that one. I had to look at his nose while he shook my head. One time when he shook my head Stuart said he saw my eyes jerk, he said it was “kinda freaky”. The doctor asked me to stand up and I staggered a bit, he said never mind, sit down, be careful. I guess that answered that test.

He then said he wanted me to have the hearing test and come back in to see him. So I went out. I still thought it was kind of funny getting a hearing test because I’m deaf. I can hear a tiny bit in my right ear, but it is so little you may as well say, I can’t hear anything. Soon the doctor comes to the waiting room and said, the Audiologist said that since I have cochlear implants she couldn’t give me a hearing test. Yes, I kind of giggled inside. Stuart told them over on the phone that I had CI’s and a hearing test was kind of unnecessary, but they said it was ordered. Then the doctor said they could do the ENG test that I was originally scheduled for now, so he could see it. Well, I had just taken meds to help me, since I was really sick after the test he performed. I told him, that and how it said I wasn’t supposed to take any meds for like that for 48 hours before the test, and I’d already taken it twice that day. He agreed the test might not be accurate under those circumstances. Oops, kinda wish I hadn’t taken my meds, but then again, I really don’t want to be so far from home when I have that test done. I just know I’m going to be sick.

The ENG will show how much vestibular function I have left in each ear. That’s pretty important right now…..because here’s what he thinks and the plan……

He said, it is obvious I have damaged vestibular function, it is just a question of how much, and how much in each ear. He said he believes that, yes I have Meniere’s Disease, and Vestibular Migraines, and he said I have balance issues caused from getting my Cochlear Implants. I noticed before, my vertigo got worse after getting my CI’s, but no one ever said that they could have caused some of it.

He said we have to treat these in different ways. One is to get my migraines under control. He likes that I’m seeing a Neurologist that specializes in headaches, so I’ll continue to see her and try to get the migraines more under control. If we can’t do this, I may be taking another trip to John Hopkins to the Headache Clinic for evaluation. The next thing he said was, I need to have vestibular rehabilitation to train my body and brain to balance without my ears. He also said, we need to kill my balance system in my ears. We plan on doing this with gentamicin shots in both ears. How much I need to have depends on the results of the test, one ear may already be dead, who knows…we just don’t know how damaged they are yet.

I will be seeing a new otolaryngolgist here in Charlotte on Wednesday, the 16th, and we will discuss all of this, and set up getting the test that the doctor at John Hopkins wants. They will confer with each other on a treatment plan. I guess, It will also be good getting a 3rd opinion. The one from my doctor at Duke, the one from John Hopkins, and now let’s see what this doctor thinks. This doctor knows I have been to John Hopkins and they will be conferring with each other.

There are a few questions I forgot to ask. I know many of you are thinking….”You should have written them down.” I did, really, I did. But I wrote it on the paperwork they gave me, and I gave it to them…I didn’t have it after that….duh. So I’m going to ask the new doctor. It’s only a couple of things. Nothing that would really change the plan I think. I just want to know if they think my Meniere’s could be autoimmune, since it reacts so well when I am on steroids; and I’d like to know if they can answer why when I breathe in through my mouth, or drink anything cold or hot I feel it in my right ear. That’s just weird.

I know I forgot to ask him these things because he was telling me things that had been thinking for a long time. I actually asked for this treatment from my doctor. But he wouldn’t do it. He said it was too destructive and I could be so disabled I wouldn’t be able to do anything….ect. The doctor at John Hopkins looked at me and said, “more disabled than you are now?” He then asked if I had been given vestibular rehabilitation, and we told him no, that I asked for it, but my doctor had said that things fluctuated so much he didn’t think it would help. He frowned, and said, he thought I could benefit a lot from vestibular rehab….so as I said before, we plan to do that first. I went into the appointment with no expectations. Actually, I expected them to tell me there was nothing they could do. I had no real hope. I told the doctor this, he said….No, don’t give up hope. I explained, if I came in there thinking he was going to fix me and then he couldn’t do anything I would have fallen apart, if I came in there with no expectations, I would be thrilled if he could do anything. He liked that. We talked a bit more, and he insured me he would consult with my doctor here and answer any questions, and if I came back up there he would be happy to see me. Then when I left he shook my hand and told me that it was a true honor to meet me. That shocked me. I told him it was so very good to meet him and thanked him profusely. and went on my way.

A little about the trip itself…….The trip up to John Hopkins was pretty uneventful. We stopped by Duke to pick up films that I’ve had done….you know, MRI’s, and such. When we went through Washington, I saw the White House, the Jefferson Memorial and the National Monument in the distance. I’ve been to Washington before and have seen those things up close, but it is still kind of magical to me. I don’t know why. Driving into Baltimore, it seemed so BIG. The GPS told us to go straight when we should have gone to the right to get to our hotel and we ended up in a very sad part of town. The buildings were mostly boarded up, yet there were a few businesses here and there. I can’t imagine how they would ever do any business. One place we passed there were a lot of nice cars parked on the road, and one burnt out car right in the middle of them. Soon we made it back to our hotel. It was just a very sad detour.

On Wednesday night…well I guess it was Thursday morning…Stuart shook me awake at 5am. I thought, we don’t have to be anywhere, why is he waking me up. I read his lips… FIRE! I was awake then!! He pointed to the alarm. The Fire Alarm was going off. I jumped up and put on enough to get out of the hotel…it was very hard for me to go down 3 flights of stairs!! We were all out on the street and almost immediately there were 2 fire trucks on the scene. No fire. I never found out what happened. I could not climb back up those stairs, and it took a while for them to turn the elevator back on so we had a bit of a wait. That was fine with me. I was very impressed that the fire department got there so fast. The scariest part for me, if Stuart had not been in the room I never would have known there was a fire alarm going off. I would have slept right through it.

Well, we had an adventure! I told Stuart when we got back to the room, that with all this stress, I still hadn’t had a vertigo attack…that was amazing….so, we were moving to Baltimore. But I spoke too soon. Of course, I woke up with one the next day….and it lasted all day….but I spoke about that earlier in this post.

I was a bit disappointed that we didn’t get to do anything while we were there. The one day I felt good, we wasted because 2 of my shirts didn’t get packed so I didn’t have enough clothes. Curses. The next day if I had felt well, we were going to do something. We planned to go to the Aquarium, it wasn’t far from where we were staying. However, of all the sites in Baltimore that there are to see…..after all it is home to one of my favorite poets, Edgar Allen Poe…I really wanted to see Charm City Cakes. Yes, I wanted to go see a Bakery! I didn’t even care if I went inside, I just wanted to see the building. It is the bakery from the show Ace of Cakes….that isn’t on any more.

Duff Goldman started it..still owns it, has a second one in LA now. He is often on the Food Network. They do spectacular work, and I was just a huge fan of that show, and I just love Duff. I could just eat him up. I love the story behind his life, and I love his personality. I regret that we didn’t at least drive by Charm City Cakes. Yes, I am a goof. I was sick, had a migraine, couldn’t focus worth a toot, had about 8 hours on the road ahead of me…and I regret that I didn’t stop by and see a bakery. But hey, what is life without the little things?

What You Shouldn’t Say To Someone Who Is Chronically Ill…and why you shouldn’t say them to me.

On October 9, 2015October 9, 2015 By WendyIn Chronic Illness, Invisable Illness14 Comments

Shhh... photo by w. holcombe — Shhh…
photo by w. holcombe

I found a wonderful blog called Indisposed and Undiagnosed. (actually she found me first…and I’m so very happy she did!) She wrote a wonderful article about What You Shouldn’t Say To Someone Who Is Chronically Ill. She has GREAT answers to her questions, and I think everyone should jump right over there and read her post! She’s a fantastic writer and you will love her answers and suggestions on how to really talk to someone who is chronically ill.

Here’s her suggestions on what not to say….I wanted to list my reasons for why….

10. “It’s just a bad day”

I do have worse days than others….but it’s never, “just a bad day”. I live with this every single day. Even on the days I can do more, I live in constant fear that it will be stripped away. I have to be aware that a severe vertigo attack could hit at any moment, I have to be prepared for the worse. I know a cluster headache too could take over and have me writhing in pain, praying for death over that pain. (they aren’t called suicide headaches for nothing!) I also live with a chronic persistent headache that never goes away. I’m very grateful for my better days and try to take full advantage of them…but I never have “just a bad day”.

My bad days are severe. I can’t focus on anything. The world spins violently. I throw up…a lot. I’m often in pain at a level of 9 or10 on a scale of 0-10. My bad days often end up in the ER. These are not the days I show many people.

9. “Have you tried…” // “You should try…”

Unless you have what I have….please try not to go here. When you do have what I have, we can compare notes, but normally I’ve tried all of that too. However, I don’t mind talking about it….unless you are trying to sell me something, or really think what you are telling me is going to “cure” me. There is no cure. If you think it might relieve some of my suffering, by all means talk to me…but don’t talk down to me.

I’ve tried so much, you have no idea. I’ve also had many reactions to things I’ve tried. And yet, I’m still searching and trying new things. I have to be careful, I have a lot going on, I am not going to compromise my health by trying something that my doctors don’t okay first.

8. “Come out with me and you’ll feel so much better”

This may be said with the best intentions, but I won’t feel so much better. I might end up feeling worse. But that isn’t to say that some days I might want to get out. Some days I really want to go out. However, you have to be understanding if I say I have to go home…NOW! And we would only be able to do the most gentle of outings. In a quiet place…unless you can be very understanding about my hearing.

The thing that I’d much rather hear is…..”Would it make you feel better to get out for a while with me?”

I normally can’t go out and do much. A visit would often be better, just sitting with me and telling me about your life would be great.

7. “At least you don’t have…”

I used to think like this, but I can’t compare how I am to others. I am very compassionate to everyone who has any kind of illness….they have their fight…and I have mine. I was told by my doctor when he diagnosed my vestibular illness… “I think this is one of the worst diseases that I know of that will not kill you. However, sometimes you will probably wish it would.” I’m not saying that for pity, it is just the way it is. No I don’t have certain diseases that can be much worse….and I am very grateful for that. If I sat around and only thought about…at least I don’t have ______. It would drive me crazy with guilt for feeling any suffering over my illness, and that would be impossible. Yet, my illness has made me much more empathetic toward others who are ill.

I must be gentle with myself, I know this is a hard road to live on, and carry on the best I can.

6. “You need to stop being so negative”

I try SO HARD not to be negative. I try to keep…not so much a positive outlook, but a realistic outlook….and I do not sit around feeling sorry for myself. I accept how my life is, and try to make the best of it. Sometimes that is damn hard, and yes I can be a bit negative, I get depressed, and overwhelmed. Wouldn’t anyone?

I don’t have many people to talk to, my dear hubby is the only person who really hears it all. When I see friends and they ask about things, they may hear more than they want. I don’t mean to sound negative, I’m really just telling things the way they are…just the facts. And unfortunately, when you asked, I thought you wanted to hear about it.

Imagine if you had a stomach bug and a bad headache for over a year….wouldn’t you feel a bit negative sometimes, and need to complain to someone every now and then? Well I’ve had a lot more than a stomach bug for and for longer than a year…understand a little?

5. “You got this because…”

I’ve heard this one a few times….I think I kind of ignore it. I mainly hear things like this from people who are trying to sell me something to “fix” me. Other people, I think….really? I’ve been to how many specialist who can’t figure it out…what makes you think you know? Now, I do hear it from people who have diseases, trying hard to figure out why they have it. I went through that. Why me? Then I realized…Why not me?

What really bothers me is when I have a vertigo attack, severe migraine or really bad day and people say….”What caused it?” Really? Do you think if I knew that I wouldn’t avoid it?

Or they try and figure out what caused it…..Okay, yes these things can have triggers, but most of the time, I have no idea. The only thing I have figured out that really bothers me is the weather and we sure can’t control that.

4. “So, what’s wrong again?” // “You’re still sick?”

This tells me you don’t think I really have a chronic illness that is not going away. It tells me you don’t believe me. It also tells me that you think I would play the “sick card” to get out of doing things with you.

Well, I am sick. Yes, I am still sick, chronic means it is not going away. I wish it would. I want it to be something that I could just take a pill for and it would get better. You probably get sick and it goes away in a little while, you have no idea what it is like to be sick all the time….and I am so very grateful that you never have to feel this way.

I hate being sick all the time. I never know what may happen in the future, everything changes, maybe this will change, but the prognosis is that it isn’t going away. I had to get used to it, I hope you can.

3. “You’re just exaggerating/making excuses/want attention”

I’ve never heard anyone say this to me….but I’ve been told it has been said behind my back. Sad huh?

Well…..It hasn’t worked has it? I’m alone most of the time. I’m lonely. I miss people. If you are reading this and you think I ever did this….I promise I haven’t. I really don’t want the kind of attention I get by being sick. I don’t want attention from doctors, or platitudes from people. I want to be able to have relationships where everyone feels I give as much as they do. I want to work and play and live……just like everyone else. But my life is different now. It’s much different. Some days, I’m okay with that. Other days, it tears me apart.

Just know…..everything I say about my how I feel and about my illnesses are true. I do not want special attention because of them. I only want a life.

2. “But, you don’t look sick”

What exactly does sick look like? No…really…think hard. Of all the people you have known, all the movies you have seen with sick people, all the times you have been sick….did they all look the same? Sick people look different. We don’t all have sicknesses that show on the outside, all the time.

I try not to let people see me at my worst. It scares me. When I have a vertigo attack I am terrified, I do not want anyone near me who isn’t my husband or medically trained to see that. I hide my pain as much as I can, if I can’t I need to be away from people. Understand, when I’m at my worst you won’t see me, so of course, I don’t look sick when you see me. You also have to understand, I may be gripping everything bit of will I have in my body to hold it together just so I can look good in front of you, so I can be as normal as possible for a moment, I don’t want to scare you away by looking as sick as I often feel. I’m afraid you will never come back if I look too sick…..yet if I don’t look sick then you think I’m not…..it’s very hard to know what to do.

I usually get…..”You look so good!” or “I’m so happy, You look Great!” or worst “You look like you feel so good” ….. Most of the time this doesn’t bother me. I don’t let a lot of people know how bad I feel. It bothers me when someone close to me, who knows I have been having a very hard time, sees a photo of me and says one of these things….I suddenly think….Really? You too? You think just because I look good for this posed shot that I feel good?

1. “It’s all in your head”

I’m lucky, no one has ever said this to me. Of course, I’m not sure if anyone has ever said it about me.

I love the answer that Indisposed and Undiagnosed gave….it is so true:
“The only thing I can say to the people who have used this line before is;

Yes, it is all in my head.

I used to feel so hurt when someone would say that to me, but then one of my specialists told me that, it really IS in my head. It stems from the brain, which controls our entire body.
It might be my brain, it might be an organ, but whatever it is; IT ISN’T DOING WHAT IT IS MEANT TO BE DOING.
So, do not feel ashamed or upset, and most certainly do not second guess yourself if someone ever says this to you.
It really IS all in your head (hehe).”

Be sure to go to Indisposed and Undiagnosed and read her suggestions thing you CAN do for people with Chronic Illnesses.

I’ve decided to make that a separate post….I have a lot to say…haha

** Please note** I do not blame any person for dropping out of my life. It is hard to stay in touch with a chronically ill person. Especially in the beginning when they are so hurt and it is so consuming. After that, it is even harder to come back in. Life changes, I understand that. For those who may want to communicate with me on any level, I welcome you. Being chronically ill and mostly housebound is a lonely life sometimes.

Chonic Pain/Ilness Photography 2015 Project Week 2

On May 13, 2015May 13, 2015 By WendyIn Chronic Illness, Chronic Pain, Photography4 Comments

The second week of the Chronic Pain/Illness Photography Project I have been participating in on Facebook has been amazing. The people who are contributions and contributors are amazing. This has become so much more than just sharing photographs, we are sharing our deepest fears, pains, joys, loves….our lives. The support that has been given and felt is nothing like I expected from a Photography Project. The project has been consuming. When I’m not working on the theme for the day, I’m looking at contributions, reading stories, commenting, sharing….when I’m not actively working with the project I’m often thinking about the people, or a certain entry that has touched me. This project will touch me forever. I hope you enjoy my interpretation of this weeks prompts…..

Day 8 – Affirmations

I try to live a mindful life. These quotes help me remember to live in the now, and remember that my body, just as it is right now, is just fine (I’m only human).

I also try to remember to be gentle with myself, I’m the only me I have. (I have a habit of beating myself up a bit, expecting more out of myself….my doctors, and my husband have often told me to give myself a break..I’m learning to.)

The photo on the left I took of my toes in the ocean, with a quote by James Baraz –
Mindfulness is simply
being aware of what is happening right now without wishing it were different.
Enjoying the pleasant without holding on when it changes. (which it will)
Being with the unpleasant without fearing it will always be this way. (which it won’t) – James Baraz

On the right, a photo my husband took, with a quote by Pema Chodron –
Realize that this very body,
with its aches and its pleasures….
is exactly what we need to be fully human,
fully awake, fully alive.

Day 9 – Support.

The greatest Support I have is my husband. This photo is from our wedding. When we got married, 10 1/2 years ago, I was sick, but not nearly as sick as I have been in the last 5+ years.
He had no idea what he was getting into, but he has always been my greatest support. He is always by my side, always holding me, understanding when I am a complete bitch to him, helping me with the most humiliating task, watching me go through numerous painful medical tests and treatments….he is the only one bringing home any finances, and he also cooks, cleans, takes care of our pets and me.
I feel he has sacrificed so much to give me the best life possible.

He says I am his support, that I am what gets him through the day, I am his inspiration….He tells me he was a selfish person before me, that he strives to be a better person because of me, he tells me that nothing he does is a sacrifice because he’d rather be with me, than do anything without me. How can this be? How can he give me so much, and still think that I am an equal in this relationship?

Our relationship gets better and better. (we did go to therapy to help deal with me losing my independence and understanding how to deal with a chronic illness. The therapist I went to, and soon asked my husband to join the sessions, works a lot with people with chronic illnesses.)

Our relationship is really my biggest support. Together, we can do this.

Day 10 – Comfort

Comfort comes in all shapes and sizes for me.
When I first thought what I reach for first when I need comforting, I thought of my Monkey. I got him right before I first started getting really sick. He has seen me through a lot. He not only cuddles with me, but he makes a great neck pillow, a lumbar support…ect. I take him just about every where. Yep, this grown woman takes her stuffed animal to the hospital with her!My painting of Buddha meditating represents my mindfulness practice, and meditation. Mindfulness practice has been a great comfort to me. I think it has helped me more than most medical treatments. I have also begun to study the Buddha’s teachings in the past few years and this has also been a great comfort to me.

The photo I took of the wild flower with the little bee on it is comforting to me because it reminds me to appreciate the little beautiful things I see, and not get so caught up in all the pain and suffering. It reminds me that life is constantly changing, just as the seasons change, my life is changing….I take comfort in that.

Day 11 – Who I Was:

This was the hardest prompt for me to date. It brought up so many emotions. When I first read “Who I Was”, I thought, I’m still the ME I’ve always been, yes, I’m sick, but I’m ME….then I started looking at pictures…thank goodness I don’t have a lot of photos of the “before” pictures on my computer. This brought up a lot of emotions. Emotions I thought I’d dealt with a long time ago. But grief isn’t linear, and right now, I’m grieving a bit for some of the old Wendy…..this just touches on some of the old me…A little of Who I Was….
top left: a selfie with (my then boy friend) now hubby – a little sexy thing. I miss feeling sexy, or being able to have sex without pain, or being able to have a normal sex life….no, to be honest, I really miss having a wild sex life! I finally met the love of my life, and not long afterward my sex life was ruined. I’m not that me any more.top right: I’m in the front on the left. This is a birthday party for one of our old friends. This was a normal occurrence before I was sick. I was social, I entertained. I went to museums and art shows and parties…… I had a lot of friends. I’m not that person any more.

bottom left: Me on the left with a friend at the NC State Fair. I was spontaneous, I could run, and jump, and play….I loved playing with kids. I was FUN. (sometimes I still am, but it’s hard..it sure isn’t spontaneous, and I pay for it afterward) I used to do these things without fear. I can’t do that any more. The now Wendy is full of fear.

bottom right: Me cooking…well baking…well, enjoying the products from baking…haha. I love to cook. I love everything about it. I have fructose malabsorption, I’m allergic to wheat, I’m hypoglycemic…..ect… These things, well yeah, I’m sick with it, but it didn’t matter much except when eating out, because I loved to cook! It was just a challenge. I loved to play with ingredients and learn to make new flavors with the foods I can eat. I had a gluten free food blog with close to 2,000 followers. Suddenly my balance issues got too bad. I was having too many accidents in the kitchen. I can’t cook now. I really, really miss this….this is one thing I hope I can get back. I can’t drive either, but I’d rather be able to cook than to drive. And I live in an area where I can’t really get anywhere without being able to drive.

Day 12 – Motivation

LIFE – My little flower represents life….even when it isn’t supposed to be there.

Much of what I’ve already posted are motivators to me, however, I think the thing that motivates me the most is life. I want to live my life. It may not be the life I expected, but it’s still my life. I’ve learned to change those expectations…and simply live day to day.

I read something recently that stuck with me.
Sometimes the best way to motivate yourself is to stop trying to motivate yourself. (That really hit the nail on the head with me. Sometimes I have a hard time getting motivated, especially when I’m depressed. Sometimes I just have to act.)
You do not need motivation to act.
You do have to make a conscious decision to act.
The action could be big or small.
It may not turn out the way you want.
How you feel about that is irrelevant.
(OK…that part is really hard. for me this part means, being ok with how things are, no matter what happens.)
Actions move you forward.
Waiting for motivation keeps you stuck.
What you do with this information, you do in this moment.
The decision is always up to you.
(this came from a website called mindfulness over matter)

I also have to remember to always be gentle with myself and forgive myself if things don’t turn out as I planned. If I can’t get motivated or even act on something sometimes, it’s ok, forgive myself and move on. Give myself a break.

Day 13 – Challenges

Whew – To sit down and think of all the challenges I face each day, I couldn’t sum it all up here. It was difficult to pick what to share with our group.

In the center of my collage you will find a lot of spoons on the floor. If you are acquainted with the spoon theory you will probably understand this immediately. If not, I recommend you read it, you can find it here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ I haven’t been the biggest fan of the spoon theory myself, because there are many days I have no “spoons” and I still do things, sometimes you just have to push through it or you don’t make it to that doctor’s appointment you made 3 months ago (yes, I’ve still had to cancel those way too many times). But for me this represents all the challenges I face on a day to day basis that take every bit of my energy, or that I have to get up all my courage to do (like take a bath or shower) that normal people have no problem with.

From there we will go from top left to right around to the bottom left.

Selfie of my incision after one of my ear surgeries. This represents the challenge that I’ve had many surgeries on my ears and they are still ruling my life. Between the vertigo and the lack of hearing, causing me to shy away from social interaction and have fear almost every moment of the day that I will be attacked by my own head and lose control of my body.

The next photo represents one time I had vertigo when in public and was stuck in a parking lot of over 4 hours, I was 1 mile from my home. I finally got my husband to get me home, I ended up having a violent attack for over 9 hours. I thew up most of this time and lost control of all bodily function. It is a huge challenge to get over my fear of having vertigo in public and just go out, and it is a huge challenge swallow my humility and allow my husband to take care of me and clean me up when I have soiled myself.

The last on the top row, another selfie, represents my challenge of living with Bipolar I disorder. I have been mostly stable for about 20 years, but it is still a challenge. I have to be very dilligent about taking my medication and taking care of myself. I have to really pay attention to my body and my mind. If I notice any symptoms returning I need to get in touch with my doctor immediately. There is always a chance the medication my stop working. Having Bipolar I is classic Manic Depression, and it is very challenging.

The middle row left is a do not disturb sign from a trip my husband and I took before we were married. This represents the challenges I have having sexual relations with my husband. If anyone wants to talk about this, I will be more than happy to. I know this is something that is very hard to talk about, but it is very important to break down that barrier. You are not alone.

On the middle left top is a self portrait of me painting. This is a big challenge now. I can paint, but I get confused. There are many days I simply can’t paint due to pain, but I also have a hard time with subject manner and style. I feel more empty inside about my art. I would like to put my illness on canvas to get it out, but I just can’t. I’ve done a couple of commission pieces, but I have to have no deadline. It’s simply a really big challenge. My doodles make me happy, at least I’m doing something.

Just below, you will see my arm with many hospital bracelets on me. This is actually from my last visit to the hospital. This represents the challenge of having to go to the hospital so much. To so many doctors. To owe so may hospital and doctor bills that only my husband can pay. To me it even represents fighting for disability.

On the lower left you will find my Headache Pain Scale. This represents the challenge I have always found in telling doctors how I feel. I don’t feel that doctors really understand patients a lot of the time. I’m lucky I have many good doctors. I’m also lucky that I have the kind of insurance that if I don’t have a good doctor I can fire them. (and I have) But finding a doctor who really understands is a challenge. (also not being able to hear makes it hard for a doctor to make himself understood to me….we definitely can have communication troubles.

The last photo on the bottom left represents the unknown. They have come to the point that they have told me that they don’t know what is wrong. We know I have a vestibular illness, probably more than one, but they don’t know what. I have been told for many years I have Meniere’s disease. I have been through more tests and treatments than you can believe, now I’ve been told, they can’t do any more. I’m stuck with the unknown. There are other conditions they don’t know about, the Avascular Necrosis in my hip, they don’t know if I will get it in other joints….good chance. Some doctors have said that other diseases I have may all go together, other doctors say no? I think my body may hate me. The photo is an x-ray of my hip on the left, and a photo of my ear on the right that I have manipulated beyond recognition.

These are some of the challenges I face. Sorry I couldn’t keep it shorter

Day 14 – My Body

It’s cute….but very fragile.
(note, I could never get in this position, not now, but I used to love yoga, I could have…)

*this is a straw wrapper version of me, created one day when I was playing with the wrapper from my hubby’s drink.

As you can see the Chronic Pain/Illness Photography Project has become much more than sharing photographs. Everyone in the project is sharing a part of their soul. I feel so honored to be a part of this project. One week to go…..

Chronic Illnesses, one comes up, another is put on hold….

On February 10, 2015 By WendyIn Chronic Illness16 Comments

I know, I haven’t posted in a while. I feel like all I do is the same old thing, talk about me, and how I’m falling apart….or how I’m dealing with my life and not falling apart. Hopefully the later more than the former.

Well, here I am again, writing about things going on in my life….I was writing a friend a letter and thought, I really should put this in a post. This is part of the reason I started a blog. It isn’t just for other people, it is for me. To get things out, and to keep up with things. Sorry folks, I hope you don’t mind sometimes just coming along for the ride.

Of course one of the main reasons I started this blog is to let people know they aren’t alone on this Chronic Illness journey. If you are anything like me, if you have one Chronic Illness, you have more….and things are always coming up…..so this is what’s going on right now……I’m a little overwhelmed…again. I’m trying hard to take it one moment at a time, then some times I’ll sit down and think about everything that is going on and just feel drained. Whew! Am I really stressed and just don’t know it?

I seem to always have something new come up and have to deal with it, then I have to put something else on hold. You will understand as I continue. I’m going to try to make this as short as possible.

I’ve had some bladder/urinary tract troubles. I’ve been to a few doctors for this, they run a urine test and it comes back clear, my blood work comes back clear. But I’m in severe pain. They will call it, bladder spasms, irritable bladder, non-infection cystitis….but they all say, they think I have Interstitial cystitis. I need to go to a urologist to be properly diagnosed and to get better medications to help with it, but there is no cure, and some people don’t react to the treatments. I’m lucky I don’t have severe flare-ups very often. However, I do have little flare-ups often. This has been a VERY SEVERE flare. I went to the doctor on Monday, February 2nd. Of course, everything was clear, but I felt I needed to go to make sure I didn’t have an infection. She did give me an anti-spasmotic and they helped get me through the rest of the flare.

This sweet doctor was scratching her head with me, she said, “You have a lot going on for such a young lady.” She kept saying, she couldn’t help but wonder if there wasn’t one thing that caused many of my issues. Some umbrella condition. You know I’ve never had a doctor say that to me before. I’ve had Stuart say it, and friends say it, people on my blog say it, but doctors, not so much. I couple of doctors have thought my migraines and Meniere’s may have a commonality but then they kind of ruled that out…maybe….kind of. I think I might just talk to her again. (she works with my new PCP)

On the way home from this doctor’s appointment I had a vertigo attack start. Got home and it was BAD. I’ll leave it at that. You all know how what a BAD vertigo attack is like. I didn’t keep up with how long it lasted. I know my appointment was at 12:30pm and she was on time, and I was finally able to fall asleep WAY after dark. I woke up sick again and it was about 11pm. I was so nauseous for 2 days. I’m not normally like that. Usually after an attack the nausea leaves me after a few hours. The anti-nausea meds work pretty well. This time, I was really sick for days. Ick.

On that Monday I was supposed to have my intake evaluation to start my physical therapy for my hip. This had to be rescheduled. They didn’t have anyone who could do this for TWO weeks. 1st thing that was put off because of something else going on with me.

The next day I had an appointment with a new neurologist at the Headache Clinic. I had to reschedule because I was simply too exhausted to even move my head, and too nauseous. I was afraid if I pushed it I would have vertigo again. Now my appointment is in March. *sigh* 2st thing that was put off because of something else going on with me.

I went to see a new Pulmonologist on January 30th. My breathing test came out good. I do not have COPD. That’s good to know. So why am I coughing up phlegm every day? EVERY DAY since October of 2012? Yes my breathing is better, but this coughing up stuff is gross. I get awful looks. People seem to think I have some horrible disease. I’m on 3 medications for Asthma that I take every day, and I have an inhaler, that I use often, and nebulizer. And my new doctor said, “I don’t know if you have Asthma.” What? He said he needs to see my old records. He also said that you can be clinically diagnosed as having asthma but they actually have to do a test to really diagnose you, and they often don’t do this test. A lot of people don’t want to do this test, they’d rather just be treated for the symptoms. Usually the symptoms present themselves so clearly that they are sure enough that they clinically diagnose it. That is what the doctors did with me. However, I was not presenting with the symptoms when he saw me. So he needs to see my records.

There is a possibility that my acid reflux may have something to do with this cough. So I need to have a barium swallow on Friday, February 6th . Oh wait….I was still too wiped out from the vertigo attack and in too much pain from the flare-up to be able to do this, so I had to reschedule to February 20th. 3rd thing that had to be put off because of something else that is going on with me.

I did finally get an appointment set up for the CT scan for my hip. It is set up for this Friday, February 13th. I will know soon if my hip does in fact have avascular necrosis. If it doesn’t I do hope this CT scan shows what the problem is, with all the pain I am in, I will be very disheartened if the doctor tells me he can’t find anything. (not that I’m looking forward to, or wanting, a hip replacement)

Trying hard not to think about what may be, just living in the now, and waiting for what will come. After all, none of my worrying about it will change anything.

Want to hear something really funny. After all of the things I’ve been through. All the crazy tests, all the things I’ve been told to give up….different foods and such (for example, I eat mostly whole foods, no refined sugar or gluten. I only drink water. I can’t eat onions, garlic, apples, pears….all kinds of foods…it’s challenging sometimes. But I have to use these food restriction of I get sick.) I have been told in the past to restrict my intake of chocolate because of migraines. Well, I found I could still have a square of dark chocolate now and then and it didn’t bother me. I just didn’t over do it and I was fine. Really, I could eat more and I didn’t have problems with my head, my tummy or bladder might not like it because of the caffeine, but my head was OK. But if I limited it to my little square I was good, all the way around. And I was a happy girl. I could still have chocolate.

Dark Chocolate image from medicalnewstoday.com — Dark Chocolate
image from medicalnewstoday.com

Then it happened. I had my square and immediately I got the worst migraine. Oh no! and my bladder started to scream! What? No!!!!

I waited a week. I tried it again. It happened again! NOOOOOO! Not chocolate!!!!

I literally cried!

I’ve given up so much.

my beloved apples.

dried fruit.

asparagus

onions and garlic

NOT CHOCOLATE!!!!

The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!

I need to admit it, I’m having a hard time.

On October 22, 2014 By WendyIn Chronic Illness12 Comments

Ahhhh!!! I wrote more on this post, I revised it, I saved it, I really did. I wrote more on it last night, and saved it. I opened it this morning and wrote more, I revised….I just tried to put in a photo and finish it up….error. Really? So I thought, I’ll save it and then try again. It asked, “are you sure you want to do this?” I knew it was too late then….all my work today was gone. Oh but wait, a lot I added last night was gone too! All my revisions. What the???

I can’t do it again. So all the revisions, all the changes, you aren’t going to get. Because now I have a migraine. I really want to post this today. The parts that say today in here, are really yesterday….that was fixed in the revision, but Oh well! This is what you get today. I was feeling better today after voicing a lot of this, so today it was changed to be a bit more positive….you wont’ see that. WordPress is not being kind, and I’m going to live in this moment and not deal with it. haha

So….here you go….the post that is kind of what I wanted to write.

I haven’t written much about how I’m really doing. About how some things have been getting to me a bit. I’m trying hard to keep mindful and stay diligent with my mindfulness practice, but I have to admit, I’m not far enough along in my mindfulness studies and practices to counteract my feelings right now.

When we first moved to Charlotte, I was feeling so much better! I was able to do things around the house, to take walks, to well….do things! I could hear. I was thrilled the last time I went to Durham I had a long conversation with my old neighbor and not once did I have to ask her to repeat herself. Not once! That was amazing!! That has drastically changed.

Right now I can’t walk very far at all. I can’t walk at all without pain.

I still haven’t been able to start physical therapy. It’s mostly my fault…bad decision in the beginning, I thought I should wait until I saw the hip doctor to make sure he didn’t want to add things to the PT orders, or something, heck I don’t know, it seemed like a smart thing at the time. That delayed things almost a week, then we called to set up an appointment, it was a week out! So that is 2 weeks I wasted. So my first appointment was supposed to be today. I had a cluster headache last night, when I woke up this morning I had no balance and felt like I had a hangover. There was no way I could go to physical therapy. I could barely stand up. So again a delay….until Friday. *sigh*

My back actually feels better, I don’t have a lot of pain shooting down my leg any more. My hip still hurts a lot. But the hip doctor said nothing is wrong with my hip. He was actually not someone I would want to see again. He was the type of surgeon who looks at a scan and says, “Your CT scan is basically normal, there is nothing there I can fix.” and then proceeded to tell me it was therefore all coming from my back and good bye. Even though I didn’t hurt my back until after my hip pain started! The back doctor said, yes I have a herniated disc, but I also have hip problems too. The back specialist was wonderful! He believes in conservative treatment first, and explained things well, was very knowledgeable. I would recommend him to anyone! This hip doctor, was knife happy. If he didn’t see something he could immediately cut on me to fix, it wasn’t his problem. No matter how many questions I had. I told him that I could have gotten that information on the phone, and I was sure that was the quickest visit he had that day. He said, he loved giving good news. Ugh!!!

I’m trying hard not spin “what if” stories about the future with the hip/back thing. I will live in each day. I WILL! I will work hard at my physical therapy and get my muscles back in shape, and deal with how it turns out when it happens. This I will do. It is just really hard.

Since the Fall weather has begun my ears have started to tell me they are in charge of my life again. I was having multiple vertigo attacks a day. Just little ones, I handled them pretty good. It was exhausting. It was driving me crazy. I was trying so hard. Every afternoon around 4 or 5pm I start having tinnitus that is pretty relentless. It is hard to deal with. It can drive you insane to hear this very loud noise every evening for hours. My hearing sounds like I’m listening through a deep barrel. This reverberating noise. It has gotten much worse since I had the very bad Meniere’s attack about 3 weeks ago. My balance has gotten much worse too. These things have been exceptionally hard to deal with. I can’t stand to be in a crowd, heck I can barely stand for Stuart to talk to me in the evenings. I have been having slow vertigo almost constantly. If I focus on one thing it moves. Nothing is ever still. I always feel like I am slightly moving. This scares the mess out of me.

So where am I now?

I’m scared. I’m lonely. I’m sad. I’m mad. And I’m determined to NOT feel like this for long!!!!

This is a time when I have to be careful not to dip into depression. I have to pay close attention to my bipolar signals. I have to up my coping mechanisms. Be sure to get plenty of rest, keep up with my stress, take my meds on time……pay attention to me. Bipolar can sneak up on you at times like this, even when you’ve been stable for a long time.

Before I was when I was really sick and I was alone because I felt so ill. Being alone was felt better for me. I was almost afraid to be around other people. Now, I don’t feel that bad…I’m not in horrific pain, I’m not throwing up all the time. I just can’t stand to be around people because I can’t hear them. I get confused. Noise drives me crazy. I can’t go for walks. I can’t get out in the neighborhood and meet people. I’m very disappointed right now.

I wanted to do things here. I wanted to get out and really have a life.

I’ve been stuck on this couch for so long.

am I giving up?

What do you think???

I have an appointment with a new otolaryngologist here coming up soon. Will he be able to do anything? Maybe not. But he will be able to give a new perspective on things. This is a big clinic here and they are doing some studies on Meniere’s. I probably won’t qualify for any because I am so advanced, but since they are so interested in the disease means they have some people there that are open to different things. So who knows? I will also be getting my Cochlear Implants adjusted. After I have a major attack I always have to have them adjusted. They think it’s because when someone with Meniere’s has an attack the area in the cochlea swells, well that is where all the wires are for the cochlear implant, that is how I hear. They get pressed on and it changes things. So things have to be adjusted. This doesn’t happen a lot with people who have Meniere’s who get CI’s because usually when they get to that stage they have stopped having vertigo attacks, or they don’t have them very often. This has become a pretty routine thing with me. So I had to find a CI audiologist close to home.

Even if the new doctor doesn’t help….I will deal with things. I’m sure we can get my hearing better. If not, I will deal with it.

That’s what I do. I accept things, and move on. That’s life. and as much as the road as been a bit rocky lately and I have had a hard time dealing with things, I still love my life. really I do! I have a lot to be grateful for…I’m just a little overwhelmed at the moment. Having a little bit of difficulty with “not wanting things to be different”. I want things to be different. Right now I want that very much. If it doesn’t change? I will adapt. I will change my expectations. I will accept. It will just take me a little bit.

Feeling Better – Part 2 (Diet)

On August 7, 2014 By WendyIn Chronic Illness9 Comments

"The Perfect Diet" by Fatal Potato deviantARt.com — “The Perfect Diet” by Fatal Potato deviantARt.com

I’ve started this post at least 4 times….how to explain my diet and why it has changed without telling you my whole history with food and health.

Let’s try to put it in a as few words as possible. Years ago I had a lot of pain and health issues including Gastrointestinal (GI) issues that no one could really explain. They gave me lots of labels and none really fit. Eventually I found out I was “slightly” allergic to wheat, so I quit eating it. I felt better. I decided to stop eating gluten all together. For many reasons. That’s not what this post is about though…so to make this shorter I’ll leave that there.

I also have migraines, gastritis and irritable bladder…all of these require me to be picky about certain things I eat. For instance, I can’t have caffeine, red wine, I have to be careful about chemicals in foods, acidic and spicy foods….all kinds of things. Even my beloved dark chocolate can cause me trouble. (I am allowed small amounts. So I savor it.)

What else do you ask? I have Meniere’s disease as you all know. With that comes a low salt diet. I also have Irritable Bowel Syndrome. And last but certainly not least, I have Fructose Malabsorption. I was going to try to explain this here, but again….trying to make it as short as possible, so I found that Wikipedia really did a good job explaining this, so just click on the word and it will take you there and you can read all about it. After being diagnosed with Fructose Malabsorption I had to really change my diet, it was hard. I was put on a diet called low FODMAPs.

I love the description of FODMAPs Kate Scarlata gives on her blog. Check it out. FODMAPs Basics.

Here is the list of foods I was given, what I could eat, what I couldn’t eat, how much of this and that…..I never got this right and found out some of it I still couldn’t eat.

FODMAPs Checklist

So why did I still need to change? As I said…I couldn’t get it right! I’ve been following Kate Scarlata’s blog for a long time. She is a Registered Dietitian and a huge advocate and authority on the low FODMAP diet. She knows her stuff. So when she worked on a book, a diet book no less, that was based on low FODMAPs I was intrigued. I wondered, why a diet book. But I looked at it and found, this will help me. This book could help a lot of people.

Kate says, “21 Day Tummy is a plan designed for the person with digestive symptoms that also needs to lose weight BUT if you want to just enjoy the amazing recipes and learn more about gut bacteria, inflammation, belly fat and how that all connects to your health…I think it’s a great read with excellent science for just about everyone!” and I agree.

This book starts off with a very scaled down version of the low FODMAP diet. It has now grains in the first 5 days. It does have potatoes. You have a Belly Blaster Smoothie for Breakfast every day for a while. I thought this would be torture for me, I have always been a big breakfast person, but even after I was able to start eating other things for breakfast I have stuck with my smoothies. If I eat a “real” breakfast, I normally have a smoothie for lunch. I really like them. They are good, and like a meal in a glass. I have one and I’m not hungry for hours! I do mean HOURS! It’s funny, I turned to Stuart the other night and said, “How come I can have a smoothie for breakfast and not be hungry for hours and have a full dinner and be hungry in less than 2 hours?” He said, “Me too!” Funny huh?

So I have used this diet as an elimination diet. It has fewer foods than the low FODMAPs main list to start. It has great recipes! Everyone knows how tight we have been on money, so I checked this book out of the library 3 times! Then I got a $50 Amazon gift card for my birthday and finally bought it. I also bought the cookbook. We’ve been cooking exclusively out of these books since the beginning of June. However, we have eaten out a few times. Try moving like we have and not eat out a few times. But I have stayed pretty true to the diet.

How has it worked? Wow! I have more energy than I have in so very, very long. My tummy is flatter than I’ve seen it in years. I lost 5 inches in my stomach the first week. When I eat something that doesn’t agree with me I can bloat so much that I will suddenly gain 6-10 inches in my waist, I have measured it. It is so painful! This has stopped. I accidentally got something the other night and was shocked.

I’ve lost 26 lbs since the beginning of June, most of that in June. When I started the diet it started coming off very fast, I’m glad it slowed down, I was getting saggy skin. My body couldn’t keep up with the rapid weight loss. It is still coming off, slow and steady. However, I have lost my “food baby”. Yes that’s what we used to call my tummy. Almost every time I ate, I would suddenly look pregnant. I don’t look that way any more. I still have weight to lose, but my digestion is so much better, and I just feel better.

I had a physical in June, just a few weeks after starting this diet. My triglycerides where in range! They were lower than they have been in 20 years! Yes 20 years! I have weighed much less and been much more physically fit in those years. My doctor was thrilled. My bad cholesterol was a tiny bit high, but just a very tiny bit. Every thing looked really, really good.

Is my diet the catalyst to making me feel sooooo much better. Where my gut is concerned, YES. Has it helped my fatigue, I would say Yes! Does it make me feel good, Yes. When your stomach doesn’t hurt and you aren’t worried about passing gas or running to the bathroom, or if your pants are going to fit after you eat…you feel better. Plus, I’m in smaller clothes. How cool is that? But really, that’s just the icing on the cake. My tummy doesn’t hurt any more. I am having regular poos. I know that what I’m going to eat isn’t going to hurt me. And I love my smoothies. haha Getting some of my figure back is nice, and yes, it is giving me some sexy confidence back. So that is pretty darn special.

Is it helping my headaches? Maybe. Is it helping my dizziness? Maybe. There are too many other factors going on at the same time to be able to tell, if the diet has helped This is not a diet for Meniere’s or Migraines, but I think everything is interconnected, so I’m sure everything I do affects all of me.

I know you are all wondering….what exactly are you eating?

are you really wondering that? I could give you a list of the foods, but without the book to explain things to you, and tell you why certain foods are good for your tummy and why other foods are bad for your tummy….I don’t think it would help that much. I know having the list of foods given to me didn’t help me much at all. But the book really helped. Remember, I just checked it out of the library….3 times….before I bought it. If you, or someone you love, have any tummy troubles, I think it’s worth checking out.

The low FODMAP diet is the diet for people with Fructose Malabsorption, no doubt about it. However, it is also becoming the main diet to treat those with IBS. They are finding that it is also helping those with many other intestinal disorders: IBD…Crohn’s, Colitis….ect. Oh…many people were also raving about having their acid reflux go away. Unfortunately mine didn’t, but as I said, I have gastritis. I need to have another endoscope, that part of my tummy issues didn’t go away. Drat.

The low FODMAP diet is ideally supposed to be followed for 2-6 weeks under the guidance of a registered dietitian or nutitionist, and at that time they will advise you how to introduce foods back into your diet to recognize your personal triggers. This is often hard because there are so few dietitians or nutritionist who are well versed in the low FODMAP diet. Luckily, this is changing as the diet is becoming more understood and well known in this country. The 21-Day Tummy book does have guidelines in the back to help you reintroduce foods to see what may be your personal triggers.

I haven’t been willing to try to add new foods into my diet yet due to all the stress of moving, I will start adding in new foods soon and will hopefully finalize my diet in the near future.

So now you know a little bit more about my diet. If you have questions, feel free to ask.

Next part 3 in the Feeling Better series….Mindfulness Based Stress Reduction.

Let’s Talk About Me Feeling Better…..Part 1

On July 28, 2014 By WendyIn Chronic Illness13 Comments

Freedom by w.holcombe — Freedom
by w.holcombe

First, I want to say, I’m not cured of anything. Nothing is gone completely. I still have all my Meniere’s, and it’s symptoms. I’m still deaf, with cochlear implants. I still have Migraines. I still have Cluster Headaches. I’m still Bipolar. I still have Fructose Malabsorption. I still have all of my chronic illnesses. I am still disabled I just don’t have some of the symptoms as severe as I did 3 months ago. Truthfully, I am living a life that I didn’t think was imaginable 3 months ago, and in this series I’ll talk about some of the reasons I now think it is possible.

There have been a number of things that have contributed to me feeling better and I think it’s time that I laid them all out there for you. I haven’t revealed everything before for a couple of reasons. One, I was afraid it was temporary and I still am, 3 months is still a relatively short amount of time to tell if these things are going to continue to work, and two, one of the things is something that could be dangerous (and really may stop working at any time)….let me explain.

I will explain the dangerous one first. This I wasn’t even sure I was going to talk about…but I think I should.

Remember how bad my headaches had gotten? The migraines wouldn’t go away, after the Botox had been working so well and suddenly it stopped working? I went for about 3 months of non-stop migraines. It was horrible!! I was put on steroids and had that severe vertigo attack and then was put on a different steroid to try to stop it….remember all that mess? Then I started getting cluster headaches. Remember? If you are a new reader you won’t remember that, but it happened…and then…

One night I had a bad set of cluster headaches and didn’t wake up the next day until 2:30pm. I woke up and my first thought was “OH NO! I haven’t taken my Diamox!” Diamox is the medication I take to control the Idiopathic Intracranial Hypertension (high cerebral spinal fluid pressure ). Without this medication I normally have an excruciating headache! However, I suddenly realized, I didn’t have a headache. For the first time in months, I didn’t have a headache. Note: NORMALLY, when I don’t take this medication, I would be screaming from the pain in my head. This day I did not have a headache.

I decided not to take it and see what happened. No headache. The next day. No headache. Days later, No headache.

Please forgive me for not telling you, but the reason I didn’t mention this before is because going off your medication without your doctor’s supervision can be very dangerous. I should have called my doctor when I decided to stop taking the medication. This could have been a medication that I needed to be go off slowly. I could have harmed myself. If you feel you are taking a medication you feel you need to come off of, please discuss this with your doctor before you stop taking it. Do this under your doctor’s supervision. I did not do this like I did. I was irresponsible.

I soon had an appointment with my neurologist, otherwise known as on here as my headache pain specialist, and I discussed this with her. Luckily, I didn’t cause harm to myself, but she did say I should have called her and told her what I was doing, just in case. The drug I was on is not one to play around with. We aren’t exactly sure what happened. It was evident that I needed the drug when I was put on it, I had a lumbar puncture to prove it and when I went on it I felt much better. As I said earlier, normally if I didn’t take it I would have had a very bad headache. We thought it would be silly to put me through another lumbar puncture just to prove I no longer needed it, as that was pretty evident. The hypothesis is that somehow my pressure spiked, (perhaps I was lax in taking my medication…I’ve been known to do that before, especially if I have a vertigo attack, I can’t keep medication down, or I fall asleep from exhaustion and don’t take it….) and I had may have had a “blowout” causing my spinal fluid to drop. I used to have that happen before, but the leaks would heal, the pressure would build back up and the whole thing would happen over again. That’s why I was put on the medication, to try to stop that cycle. This time the blowout may have cause a leak that didn’t heal, essentially causing my own “shunt” but without the surgery. So now I don’t have to be on the medication. Crazy, but that’s all we can think of??? Or maybe my body just regulated its self? It doesn’t really matter, I now feel better without the medication.

This is probably the main reason my headaches are so much better. Again, I still have headaches, both migraines and clusters. The migraines are just much better than they were. I can’t say that about the clusters because they didn’t start until right before this happened. I don’t have a lot of these so far. I’ve had more than I’d like, and I hope they don’t increase.

This could also have helped some of the vertigo, but I don’t know. The only time my pressure changes really cause vertigo problems I have very severe vertigo attacks. I have not been having the horrible vertigo attacks, the kind that where I spin for hours and lose all bodily functions, but I haven’t had those in a while. I have been working hard to control those attacks. That’s part of another thing I’ve changed…something I started changing before the whole medication things happened…but I wanted to tell you about this first. So, to tell the truth, I really don’t know if this has helped the Meniere’s symptoms or not. Mainly, I think it helped the horrible headaches.

Now there is a chance that eventually this leak may heal and my CSF pressure will once again build back up and I will have to go back on this medication. I sincerely hope this is not the case. The medication that is used for this, is not a friendly drug. I hated it. Side effects…ugh. Again, another reason why I didn’t mention this, I knew there was a very real possibility that it would be a short lasting “fix”. Now after 3 months, I’m a little more optimistic.

There are TWO other major things I changed that I believe have caused major life/health transformations.

One of is my Diet. (This will be Part 2 of the Feeling Better Series)

One of is studying Mindfulness Based Stress Reduction…this is the best thing I’ve ever done for myself! (This will be Part 3 of the Feeling Better Series)

Picnic with Ants

Tag: Headaches

Migraine Madness

Update On My treatment

The Crud

My Visit to John Hopkins

What You Shouldn’t Say To Someone Who Is Chronically Ill…and why you shouldn’t say them to me.

Chonic Pain/Ilness Photography 2015 Project Week 2

Chronic Illnesses, one comes up, another is put on hold….

I need to admit it, I’m having a hard time.

Feeling Better – Part 2 (Diet)

Let’s Talk About Me Feeling Better…..Part 1

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