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?

An Article About Me…by Dr. Sanjay Gupta

On November 28, 2015 By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness8 Comments

I wanted to share with everyone that I’m featured in an article in Everyday Health. It is titled How Vertigo Changed My Life. I am one of two women featured in the article. I’m thrilled that Dr. Sanjay Gupta, felt that the impact that vertigo can have on a person’s life needs to be brought to the attention of the public. The general population does not know much about vestibular disorders, you just don’t hear about us very much. There aren’t commercials for medications that will help us, or anything like that. Vestibular disorders are kind of confusing, even to a lot of doctors. I’m honored, and thankful that they asked me to be a part of this article.

I hope you enjoy the article. It’s a short read. Please let me know what you think.

How Vertigo Changed My Life

Two women talk about the debilitating effects of vestibular disorders.

For Anne Kirchheimer (left) and Wendy Holcombe, vertigo has impacted their careers and personal lives.

Migraines kept me away…let’s talk about it

On November 25, 2015 By WendyIn Chronic Illness, Disability, Headaches, Migraines17 Comments

It’s very hard for me to start writing again after I have been away for so long. Especially after I wrote 2 posts that I am very proud of right before I had to go away. Why did I go away? Because my symptoms have been worse than usual. Specifically my migraines.

Me with Migraine and Minor Vertigo...by w holcombe — Me with Migraine and Minor Vertigo by w holcombe

I won’t go into a lot of detail about what happened to me specifically. Let’s just say, my migraines have been off the charts. Lights hurt, Sounds hurt, Smells hurt….yes – Smells Hurt! I’ve spent many days in the dark, without my cochlear implants on, filled with medication to make it so I wouldn’t throw up (it didn’t always work), and some days I had to wear a mask to help keep out any smells that were coming in (and we keep our house as scent free as possible). I’ve also had a lot of Migraine Associated Vertigo (MAV), or Vestibular Migraine, during this time. (you can read more about MAV on the Vestibular Disorders Association Site…just click here.) I have chronic migraines. Having chronic migraines means you have at least 15 migraines a month for at least 3 months a year. (normally, you have migraines more days than you don’t)

A lot of people think migraines are “just a headache”, they aren’t. So I’d like to take a little time to talk about migraines.

Headache migraines are moderate to severely painful, get worse with physical activity, are throbbing and often worse on one side, cause a sensitivity to light, sound, smell and last 4-48 hours (or more) without treatment. If you have any of these symptoms, please talk to your doctor. You do not have to have all of these symptoms to be classified with migraines, you can have a few. There are also different types of migraines. You might want to learn a bit about the different types of migraines…there is a list..here…with definitions and all that kind of stuff.

All the information I am sharing below comes from The American Migraine Foundation you can find out much more information there.

Migraine is an inherited neurological disorder.
One in 4 households has a member with a migraine disorder.
Migraine is 3 times more common in women than men, and will affect 30% of women over a lifetime.
The World Health Organization places migraine as one of the 20 most disabling medical illnesses on the planet. Chronic migraines are even more disabling. Yet it is almost impossible to get disability due to migraines. If you have another condition and you can add migraines to it, they might listen to you, but when I filed, they were hesitant to even mention my migraines, even though they are extremely disabling.
Those with migraine are more likely to have depression, anxiety, sleep disorders, other pain conditions, and fatigue.
There is no cure for migraine. Treatments are aimed at reducing headache frequency and stopping individual headaches when they occur. And constantly trying to find the right medications with the fewest side effects to help with this goal.
Prophylactic treatments (to reduce headache frequency) may include avoidance of migraine triggers, medications, physical therapies and behavioral therapies. This is great if you can figure out your triggers. Also, if your trigger is weather related, how are you going to avoid that? I can’t stop the weather from changing.
Abortive treatments (taken when a patient has a headache) include over-the-counter pain relievers and prescription medications. This is great, but you can’t take too many of these because they will cause medication overuse headaches (rebound headaches). See more information below. I am constantly aware of this and often afraid to take medication even though I’m in severe pain because I don’t want to go through withdrawal symptoms.
Prophylactic medications reduce headache frequency by 1/2 in only about 40% of patients who take these medications. And the 60% just suffer??
Medication side effects often limit the use of migraine medications. Oh yes. I know this very well. Severe itching, causing severe stomach pain, heart palpitations, constipation, diarrhea, tingling in my extremities, a change in what things taste like (the last two I put up with until the medication stopped working), Rocesea, low blood pressure…..It’s kind of scary sometimes isn’t it?

I only just touched on the surface of migraines. There are many different types of migraines. I haven’t even talked about all the symptoms I have.

I would like to talk a little bit more about the treatments.

Many of us cannot get the amount of medication we need each month because our insurance will only cover a certain amount. Insurance companies will often only allow only 9 pills of triptans per month, this is an abortive medication. Sometimes I have to take 2 when I have a migraine. That would only cover 4.5 migraines. If it covered 9 migraines that wouldn’t be as bad, but if you need to take 2 for a migraine, you are in big trouble. This medication works best if you take it as soon as you feel a migraine coming on. Everyone I know always waits until they absolutely have to take it because they don’t want to waste those pills. This is so sad. Ideally we don’t have to take more than 9 abortive medications in a month, but that is in an ideal world. Of course, taking to many will cause medication overuse headaches….discussed below.

It’s best if you have a preventative medication, this will reduce or eliminate most of your migraines, if it works. Unfortunately, we haven’t found a preventative medication that works for me. I have had some work for a while, then they stop. We are constantly trying new things. Until then, I’m afraid to take my medication, until I know my migraine is to the point I can’t deal with it on my own. And that is often too late for the drug to work properly. It’s a Catch 22.

We also have to worry about Medication Overuse Headaches, formerly known as Rebound headaches. Defined by the Mayo Clinic “Rebound headaches (medication-overuse headaches) are caused by regular, long-term use of medication to treat headaches, such as migraine. Pain relievers offer relief for occasional headaches. But if you take them more than a couple of days a week, they may trigger rebound headaches.

It appears that any medication taken for pain relief can cause rebound headaches, but only if you already have a headache disorder. Pain relievers taken regularly for another condition, such as arthritis, have not been shown to cause rebound headaches in people who never had a headache disorder.”

For extensive information on Rebound Headaches, The Migraine Trust has a great article titled Medication Overuse, it if very informative. If you have headaches of any kind, and find yourself reaching for medication more than 10 days a month, I encourage you to read this article. This can also include the use of caffeine.

Another issues migrainers face is that we are often labeled drug seekers. I can’t even take narcotics. I have had a migraine that has been so bad I couldn’t see and was throwing up, but would not go to the ER, because I know how so many friends have been treated so poorly there. They have put them aside and just tell them they aren’t going to give them any drugs. I don’t want narcotics. There are specific migraine medications that I want. Luckily, my doctor has taught my husband how to give me those shots so I have them at home. I’m in the minority, I’m a very lucky patient. I am able to see a neurologist who specializes in headaches. There are very few of these doctors. Most people with migraines have to go to a neurologist who see people with many types of neurological conditions, my doctor is very specialized. All she does is headaches. It’s great. She is working very hard to get my headaches under control.

There is a great infographic that gives wonderful information on Migraines here, and another on Chronic Migraines here.

That’s all I have to tell this time around. I have a lot more I’d like to share….not about migraines, at least not right away *smiles*, I hope I can come back very soon.

If I don’t get back before tomorrow…oh who am I kidding, I’m not going to get back before tomorrow….

I wish you all a Happy Thanksgiving! And I want you all to know how very Thankful I am for you. You are pretty darn special to me.

Things you CAN do for someone with an invisible illness: (with special notes about me)

On October 21, 2015 By WendyIn Chronic Illness, Invisable Illness9 Comments

Caring Hands. Photo by w. holcombe — Photo by w. holcombe

OK…I’ll be honest, I don’t know what every chronically ill person wants you to do for them, but I know a lot of chronically ill people now. Frankly if I didn’t have the chronic community I would be a terribly lonely person. That is one of the major problems with the chronically ill, especially with people like me who are mostly house bound, we become extremely lonely. Ah…but that could be a whole other post.

The list below includes things I’ve heard from chronically ill friends, most people I asked said the same kind of things that I thought, most of the things revolve around us being lonely. Hmmm… Perhaps that should be a post, huh?

This list starts with suggestions from the list on Indisposed and Undiagnosed blog, if you haven’t read her post on What not to say to someone who is Chronically Ill…don’t forget to jump over there and do it…well..go ahead, it isn’t that long…I’ll be here when you get back…………………………………………………………………………….See…it was worth it wasn’t it?? She’s pretty cool. I thought you’d like her.

Here’s a list of just a few things….with notes about how it pertains to me. Of course, this is my blog….who else do you expect to hear about.

— Keep in touch with them.

We get lonely. No matter how well we deal with this new life, it gets lonely. (a call is great for most) Just a text or email every a week or two….heck every month.

I can’t talk on the phone…these things would mean the world to me. A real message on Facebook and not just a .. “wish I could do something”. “hope you are feeling better”…would be great. Just chat for a moment. But realize, I do not normally get to talk to anyone other than my husband, so I might talk too much…just tell me you have to go…I more than understand. Please don’t start to avoid me because you can’t get rid of me. 🙂 Also, if I start to feel ill when we are chatting and I suddenly have to do not take it personally. I really am getting sick, I am not avoiding you.

We just want contact, it really means the world to us….to me. If you could just take a moment to drop me a line saying hi…and telling me something that is going on in your life…that would thrill me.

— Asking how they are…..(this can be tricky…)

Now, this is a tricky one. If you really want to know more about their illness and how things are going with their treatment and what is going on….then ask. But if you just want to know how they are doing that day, then ask that. Be careful how you word this question, or you may get more information than you want and you might get scared away. If you are uncomfortable with the information you are hearing, talk to your friend. Discuss this, try very hard to not let this come between you.

However, please realize that for someone who is chronically ill their illness is often a huge part of their life. You may have to hear somethings about it. If not about how they are feeling or treating it, but about their chronic illness friends, how they have become advocates for their illness…ect. To be friends with someone with a chronic illness is to accept they are still your old friend, but they have a new world too. The biggest thing is….we are still the same people. We are not our illness.

If you can deal with it, it would be wonderful if you could just listen sometimes. Often we have no one to just listen to what we are going through. No one to just talk to….who can just give us a hug.

I have my dear husband, but I don’t want to unload on him all the time. I have my virtual friends, who I depend on so very much. However, it would be mean so much if I had a friend I could sit and talk to sometimes, who would just listen. Not try to fix anything, just listen…maybe see me cry…and give me a hug.

— Talk to them about your life.

We still love our friends. We want to know what you are up to. More than the Facebook updates. We miss our little chats….gosh I know I do. I used to be the person my friends came to when they were having problems. I was the confidant. I was the person people leaned on. Now, people don’t want to “bother” me. I want to be bothered! I want to feel needed. I want to be a part of the world….even if I can’t go out in it. I’m still happy for everything my friends do, I’m not jealous that I can’t do them. (sometimes I miss them, but I’m not jealous) I feel happiness and love every time I hear about wonderful times my friends were able to have…..I know not every chronically ill person feels this way, you have to know your friend.

But mostly for me, I really miss good friendships. The kind where we just talk easily. We tell each other what’s going on in our lives and it isn’t judged or rushed or anything. We just want to be in each others lives. We depend on each other.

—Ask if there is anything they need.

Many chronically ill can’t get out and get just the necessities some times. I’m lucky I have Stuart. But I have many chronically ill friends on line who really need help with these things. Just ask. It won’t take much to run by the store and pick up some toothpaste or a few groceries…just pick them up when you are getting your things. It could really mean a lot. (note, many people are embarrassed to ask for help on this. It would be really nice to make up a “care-package”. Next time you visit look around and see what kind of toothpaste they use, shampoo…ect..and grab them some, and make up a package, with some cans of soup or something….how cool would that be??)

For me….I’d really love it if people asked my caregiver what he might need. And acknowledge what he does….to him, not to me. I think caregivers are some of the most unrecognized people on earth. (yes, I should write a post about that too.)

Another thing I need is a ride to places. I know that is impossible for most of the people I know, since we moved. But for others out there, many people need a ride to the doctor. I know way too many people who drive to the doctor when they should not be on the road because they have no one else to drive them. Or who miss very important appointments because they can’t drive or get anyone to take them. Stuart had to rearrange his schedule all the time so he can take me to appointments. No one has any idea how many times I go to appointments. It is crazy. Every week there is something….I normally have at least 2 appointments a week.

— Visit them.

I’d love a visit sometimes. Unfortunately, sometimes I would have to say no, because I just feel awful, but I’d love it if you kept trying. I’m alone sooooooo much. And the only person I really ever see other than my doctors is Stuart. I treasure seeing people. Be patient with me though. If I’m having a very bad hearing day, it is very difficult for me. I’d love it if I felt well enough that we could get out of the house…of course noise would have to be a factor as to where we could go.

I hate it sounds like I’m putting all of these restrictions on coming to see me…..when I desperately want to see people, I’m just always afraid I’m going to scare people off and they won’t come back.

We moved closer to some people I love very much. We saw them a bit when we first moved here, now not at all. I think I’m a bit too much to handle. Another case of, it would be much easier if I could go to gatherings and such, just be included in things they are doing, but it’s hard to make special arrangements just to see me, especially if it’s just for a little bit.

Including a chronically ill person in your life takes a lot of extra time….I realize that. It’s okay….just drop me a line, a text…I still love you.

— Don’t stop inviting.

When I asked a lot of people what people could do for them…I got this answer.

Please understand that we will often have to decline invitations, we often just won’t be able to show up….but please don’t stop inviting us. It shows us that you still love us, and want us to be a part of your world. You still believe we are a part of your world.

We want to be there. Sometimes we might be able to come…who knows.

If I can’t go, I’d love it if you shared your experience with me sometimes…..show some photos…what a great time we could have just talking about the event I missed.

— Offer specific forms of help.

Again, we are often too proud to ask for help. We also have a very hard time when someone says….”If I can help in any way, let me know.” Well, I’ll tell you, we probably aren’t going to say anything.

If you really want to help…offer something specific. Like…”I’m going to the grocery store, can I get you something?”, “Hey, while I’m visiting, how about I throw in a load of laundry for you?”, “Can I make up some freezer meals for you?” (yeah I know that’s a biggie…but you get the idea) Offer what you can do. We won’t ask you to do just anything. We do not want to put people out. We have no idea what your idea of “helping in any way” really is. You see, we already feel like a burden, we aren’t going to burden people even more by asking for things.

For me, and probably for others…you may have to just do things, don’t even ask. Come over to your friend’s house, and just tell them…you want to clean for them that day….and just do it. Yes, I might feel a bit uncomfortable, but you know what? That would go away really quick, because it would mean the world to me. Or just bring over dinner. (make sure you find out if the friend now has dietary restrictions) Cooking is the biggest problem for a lot of people with chronic illnesses. I know it is around my house, and I have a lot of dietary restrictions now.

— Help with the kids.

No I don’t need this one…but many people do.

So….offer to help out with the kid’s. Give the chronically ill person a break. Take them for the day, or when you visit, you take all the responsibility for them….anything that will help.

If you have kids, I’m sure you can figure this one out.

— Learn about their illness….and believe.

Many times when someone gets chronically ill, especially if it is an invisible illness, people have a hard time believing they are as sick as they are. It’s sad, but true.

It would be wonderful if you learned something about their illness, and always believe….even if your friend is one of the many who are sick and the doctors can’t figure out exactly what is wrong. Never doubt they are sick. Always be supportive….which brings me to the next thing you can do….

— Be supportive…..care.

Once I wrote a post and in a comment someone wrote at the end…..”I care” and I burst into tears. I didn’t know why. I only knew this woman from our blogs. But I felt she really did care. Sometimes you just really need to feel that someone really cares.

Sometimes we really do need someone to just unload on. I think I handle this illness thing pretty good, most of the time, but then something will happen and it all comes tumbling down….that’s when I really need a friend to just listen. Not to try to fix things, not to do anything really…but just listen and support me. Try to understand. I don’t want pity. I just want to vent….to a friend. And have them really listen.

I hope if the situations were reversed I would be there for you. I know I have been there for people in the past. Maybe I didn’t stick around as long as I should have. Maybe I also felt like they had too much on them and didn’t want me to “burden” them….when all the time they felt like a burden. Maybe I felt like I was in the way, life got just too busy, life got in the way……we are only human, it’s understandable.

I know since I’ve gotten sick I’m much more empathetic to people in need, and sometimes I still don’t always answer emails in a timely fashion. But I hope I never totally forget to answer one.

That’s just a few things that you can do. I know some are repeated….I think they are important. I know I’ve left out much. The main things is….Don’t forget, your friend and loved one is still the person you have always known, they are just a bit different. No, they can’t do a lot of the things they used to be able to do, they have a whole new dimension to their lives….you loved them before, there is no reason you won’t love them now.

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.

A Few Facts About Vestibular Disorders….with comments about me.

On September 16, 2015September 17, 2015 By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness7 Comments

Top Ten Facts about Vestibular Disorders (This list is put out by VEDA. The comments in bold italics are by me, all about me.)

The vestibular system includes the parts of the inner ear and brain that process sensory information involved with balance. (however, your balance is controlled by your vestibular system, your vision and your sense of touch….but mostly your vestibular system.)
Over 35% of US adults aged 40 years and older (69 million Americans) have had a vestibular dysfunction at some point in their lives. (I remember my first vertigo attack when I was 30. However, I had balance issues long before that, most likely caused because I had severe ear infections in my teens.)
Vestibular disorders can be caused by disease, injury, poisoning by drugs or chemicals, autoimmune causes, traumatic brain injury, or aging. Many vestibular disorders occur from unexplained causes. (We don’t know what caused mine. *shrug*)
Symptoms of vestibular disorders include dizziness, vertigo (a spinning sensation), imbalance, tinnitus (ringing in the ears), fatigue, jumping vision, nausea/vomiting, hearing loss, anxiety, and cognitive difficulties. (I just want to say that tinnitus can be a LOT more than just “ringing” in the ears. I rarely hear ringing. I normally hear buzzing, banging, roaring…all kinds of noises, I know one woman who hears music….”ringing” is just an easy way to explain it. A lot of these symptoms are easy ways to explain them. Your vestibular system is kinda complicated.)
Vestibular disorders are difficult to diagnose. It is common for a patient to consult 4 or more physicians over a period several years before receiving an accurate diagnosis. (very sad but true. For a long time when I had vertigo attacks the doctors had no idea what was happening, I admit I probably didn’t describe it very well. I remember once I had to have IV fluids because I was so dehydrated, my doctor was convinced I had food poisoning. When I was finally diagnosed with Meniere’s disease it was a fluke. I had been to the ER because I had been throwing up for over 12 hours and the doctor there said I was having vertigo and needed to see an ENT, this was the first time I heard the word, “Meniere’s”. I was not diagnosed correctly. The doctor didn’t do any test on me. I could have had a brain tumor for all he knew. Years later after a battery of testing at Duke, it was determined that I do have Meniere’s, but I also have other vestibular disorders.)
There is no “cure” for most vestibular disorders. They may be treated with medication, physical therapy, lifestyle changes (e.g. diet, exercise), surgery, or positional maneuvers.
In most cases, patients must adapt to a host of life-altering limitations. (That’s a huge statement…there is NO CURE for MOST vestibular disorders. I personally have had at least some type of all of the treatments mentioned…of course they are being very broad in saying what kind of treatments they are, but I use medication, have had physical therapy, and probably will again, I have extreme lifestyle changes…you would not believe how my life has changed…. I’ve had surgery many times, and I’ve had positional maneuvers…..whew…I will probably have more treatments in the future… at least I hope so, I’d like to feel a bit better than I do now.)
Vestibular disorders impact patients and their families physically, mentally, and emotionally.
In addition to physical symptoms such as dizziness and vertigo, vestibular patients can experience poor concentration, memory, and mental fatigue. Many vestibular patients suffer from anxiety and depression due to fear of falling and the loss of their independence. (Most people do not understand how a vestibular disorder can cause so many cognitive issues, but it does. With Meniere’s I’m not just afraid to fall, I’m afraid of having a vertigo attack in public…. this is horrifying. I no longer fear the loss of my independence… I’ve lost it. I can’t drive, I can’t go out alone, I use a walker, I can’t cook (it’s too dangerous with a balance disorder), I have a very hard time picking things up off the floor, I can’t take a shower, or bath without someone near by, just in case (often someone has to help me…. I don’t talk about things like this most of the time, and I often push through a lot of things when I’m around other people, but I pay for it later.)
Common vestibular disorders include benign paroxysmal positional vertigo (BPPV), Ménière’s disease, labyrinthitis, vestibular neuritis, and vestibular migraine. (personally I have 3 of the vestibular disorders mentioned here. I have BPPV, Meniere’s Disease, and vestibular migraines. I also have an unknown vestibular disorder….one that is causing me a lot of problems but the symptoms do not fit in with the other defined disorders. I will hopefully be going to John Hopkins in the not too distant future to try to find out what this unknown vestibular disorder is and maybe how we can treat it.)
In the US, medical care for patients with chronic balance disorders exceeds $1 billion per year. (I have to admit, I always wonder where they get these numbers and what they include. I have to say the treatment of my vestibular disorders has been extreme. We are very lucky we have insurance. Of course, insurance doesn’t cover everything. To give an example of just how much one thing cost…. I had a vestibular illness take my hearing and cause me to get cochlear implants, they cost over $100,000 each. That’s a lot of money. Of course, most people with vestibular illnesses do not lose their hearing. I’m a bit rare. heh… but aren’t I always *wink*)
The Vestibular Disorders Association (VEDA) is the largest patient organization providing information, support, and advocacy for vestibular patients worldwide. (VEDA has been a go to place for me to find information. If you want to know more about a certain vestibular disorder, I suggest going to their website. http://www.vestibular.org)

Does a House Make a Home? uh, oh….guilt followed me home

On September 13, 2015September 13, 2015 By WendyIn Chronic Illness9 Comments

written but not proofread…..that’ would be a big reason I don’t publish as much as I should….I reread things and think they aren’t good enough…whey would anyone care?….Oh I shouldn’t say that! ect….ect… So here you go, what was on my mind…. and another little painting I did on my phone.

We moved a year ago.

We haven’t sold our house.

Turns out we can’t. Sounds kind of odd huh? Technically we could, but it would have to be for much less than we owe on it, and much less than we had offers on it. We would have to do a “Short Sell”, and ruin our credit.

How does that happen? Foreclosures in our neighborhood. Due to the foreclosures our house is appraising for much less than it should. There are other houses in the neighborhood in the same predicament we are in. It’s really hard when we had 2 good offers and they couldn’t get loans because of the appraisal. I do not understand why the amount the foreclosed houses sold for has anything to do with the amount our house should sell for, but the appraisers have this magic formula they go by. News Flash! That magic formula, does not work! We had our hopes up a little bit because one of the other families trying to sell challenged the appraisal and everyone thought they would beat it. That the numbers would change. They lost, and everything stayed the same. That was a sad day.

What do we now? Rent it.

For a little over a year now we have been paying rent and a mortgage and all the expenses that come with both….like utilities, insurance, and for the house….HOA dues, lawn maintenance…..ect. I don’t talk a lot about money on here, we have been lucky, Hubby has had good jobs so we haven’t had to worry about paying for the necessities, medical insurance, and my bills…ect. Right now, things are tight. We don’t have debtors knocking at our door, but I’m not comfortable with the situation. It is making me feel even more guilty that I can’t work….that I can’t help. Hubby had to take a big pay cut for this job. He didn’t want take a job that didn’t give him very flexible hours so he could come home if I needed or that prohibited him from being able to take me to doctor appointments. That was hard. Another thing, I felt very guilty about. He was out of work for 16 months, it was hard to find a job with these requirements. (Well I have to admit, it was hard to find a job at the time anyway.)

This whole situation has been tearing me up inside. Because of the Avascular Necrosis, and the increased vertigo and migraines, I wasn’t able to travel back and forth to help get the house ready to sell, and Hubby didn’t feel like he could leave me alone to go take care of it, and we sure didn’t have the funds to have professionals come in there and take care of everything. So it took many months to get the house on the market to begin with. (More Guilt – a pretty useless emotion in situations like this…but I just can’t help it.)

So, I’m stuck in this city, alone. There is no one for me to call on for help if Hubby goes out of town. My cousin and his family live fairly close, but it would take them at least 45 minutes to get to my place. If I fell, or started having a scary vertigo attack…45 minutes or more, could feel like forever. However, I wouldn’t want to call an ambulance unless it was a true emergency..and yes I would call them for that. (yes I learned my lesson after I broke my foot) Often need some help, but not a hospital. Plus, who would come and get me and take me home? Hubby would be 3 hours away, and he sure doesn’t need to drive under that much pressure. Plus, my darling husband would be so worried the entire time he was gone, he wouldn’t get much done, so why go in the first place. (G-U-I-L-T….don’t fuss at me…I know, I know, gotta get over it, I was better about it, I’ll work on it.)

We had to depend on the kindness of others to help us. Our amazing neighbor helped us so much. She ran a yard sale, and got so much stuff out of the house. Another friend of mine, came and got a huge amount of stuff out of the house. Yes we downsized so much, many people helped by getting things, and a dear friend came over many weekends and helped sort, and clear things out. Moving from our house, to a little bitty duplex, was very hard….just physically getting rid of things. I have become a firm believer that I don’t need much. Especially since I’m sick. I got rid of a lot of stuff, and most I don’t miss at all. I gave away most of my art supplies. now I miss it. I do think it will get better when we get settled some place, but right now, we live in a place that is just so…..not a home. I miss seeing things where they are supposed to be. I hate seeing things that look out of place because they just don’t have a place. It looks odd. Our couches wouldn’t fit in this small place, so we had to get something else, it doesn’t look like us. Then I had to get a recliner when I had my surgery we were forced into something that really doesn’t match anything because of the short notice, and it’s hard to find one that doesn’t rock. I really tried to make this place feel like us. I have paintings and photos all over, we really tried to make it comfortable, but it isn’t.

The duplex is now….falling apart….No…really! The floor started buckling up, and last week the vent in the floor kind of exploded. When it started we thought it was water damage. It started last year, and we told the landlord. The caulked the window, even though there was no sign of water coming into the window. It seemed to stop during the winter. When it got warm it started again, now the floor is bulged out about 6 feet into the living room…in waves. It’s dangerous. The landlord is finally paying attention (after I mentioned it was dangerous, and I tripped). They finally had a professional come out and look at it yesterday, and it looks like it’s termites. It will take at least a week to fix it and they will be tearing up the whole living room floor and the hall that goes to every other room in the place. We could not be here, and neither could most of our furniture. So we kinda need to move. Before they found out it was termites, Stuart asked if we could wait until the house rents, and the landlord said yes. Now, I’m not sure he will say that, termites causing damage may trump us needed to wait on money.

What do we do if we have to leave early? Take money out of retirement, of course. Hopefully our house will rent fast. If not, that will not be good. When we move we will have to pay a new pet deposit, higher rent, a deposit (who knows how different it will be from here)….and someone to help us move….and who knows what else we have to add to this. Hubby is never going to be able to retire.

When I’ve been back to the house, it has hurt so much. The last time I lived in a house that was owned was when I was in the 7th grade. My parents moved that year and we started renting then. My father still rents the house he lives in. I always felt odd that we didn’t own the house we lived in. I always thought, if they changed their mind, we could possibly not have a place to live. When I was almost out of high school, the heating system went out in one place we lived in for a long time, and the owners decided not to fix it, we had to move. My father still lives in that house, I never felt like it was home.

After I moved out, I rented. I never felt like I had a home. Funny thing though, I’ve lived in two places that I rented that I felt comfortable in, one was a condo that I shared with a girl who is still one of my very best friends. There was one house Stuart and I rented that I felt could be our home. Then something happened to the house and again the landlord didn’t want to fix it, and we had to move. My heart broke.

Finally we bought a house. It took me a while, but I felt like it was our home. I had a little herb and wild flower garden in the front, I had a big kitchen I could go crazy in, I had a room that was all my own that I could create art in…we had a place that we could call home. That meant so much to me. As I got sick it was harder to go up and down the stairs, but I managed. We realized that the house was just too big since I couldn’t maneuver the stairs any more, and I couldn’t really create art like I used to, and we weren’t going to add any children to that big house. We thought about selling and buying a new house, but we were going to wait a bit until the market came back up a bit. Then….Hubby lost his job and things had to change, fast.

artrage watercolor of one of the wildflowers from my garden. by w. holcombe 2015

I went to our house recently. Now, my little garden is gone. It is a patch of dirt, grass, and weeds. The house looks so odd being empty. It needed to be cleaned, painted…and some various things done…..I cried, just a little, I knew it would bother Stuart. He doesn’t understand how I feel. I don’t understand how I’m feeling.

Home is not a House.

Home is where my love is.

Home is where Stuart, Max, and Kiki are.

as long as we have our necessities taken care of, what else should I be worried about.

I feel lost.

and I feel GUILTY is it completely stupid…maybe.

But let’s face the facts, people with chronic illnesses often feel guilty about …. a lot of things that they have no control over.

And I’ll talk more about that later. I’m just way too tired to talk about it now.

At a different time, This post would not have been posted because I would have gotten here and gotten overwhelmed and decided I didn’t want to show everyone how I was feeling and not end a post on a more positive note…..but today…..I’m just writing….

But know….I don’t let this guilt consume me.

One of the BIGGEST things I believe in is COMPASSION. I bet almost everyone, if not everyone, reading this post also believes in compassion. (a lot of shaking heads out there…yep, you are agreeing huh?) Then why is it so hard for us to be compassionate toward ourselves? Yes, I feel guilty over things I have no control over. Then I sit my butt down and have a little cry….yep I get all over whelmed with all of this and just cry….then I talk to me, like I would talk to you….and I feel that wonderful feeling toward me….compassion.

And the guilt isn’t so big any more.

Sure sometimes it seems to build back up and crawls back up on my back, but I’m a pretty compassionate woman. I can reach out and feel compassion for others and me.

There are other ways to deal with the guilt, but I think that compassion is the best place to start.

Heck…I think compassion is just a pretty good place to start…….period.

JUST WRITE!

On September 8, 2015September 8, 2015 By WendyIn Chronic Illness10 Comments

I’ve started so many blog posts and I haven’t gotten any posted.

Why?

Because something would happen, and the post would be out of date….of course most of you would not know about what happened, but I would have to go back and change everything.

and posts would get longer

and I’d have to catch up

and I’d get further behind

and I’d end up not writing.

SO, You know what?

I’m just going to write right now. I’m just going to put something out here to get me going!!

and of course…..I’ve been having vertigo today…and here it comes again.

So this post is going to be very short.

However.

I wrote something!!

It’s out here on the blogosphere…..however you may spell that….ha.

This month is Pain Awareness Month.

the 10th is Suicide Prevention Day

Next week is Balance Awareness Week.

Wanted to put a shout out to all of those….just in case I don’t get anything else done.

Hopefully I will!!

I will be writing more.

you may get posts that seem like they are half a post….and maybe they are, but I need to write and get it out, so I’m going to put out what I can write. I hope you understand it all.

Here’s a little picture of a flower I “painted” on an app called ArtRage on my phone. I’ve never done anything like this before.

It was fun….and a little hard.

by w. holcombe do not copy without permission — by w. holcombe
Please do not copy without permission

Where ya been?

On August 12, 2015August 12, 2015 By WendyIn Chronic Illness, Chronic Pain9 Comments

11351133_10206617026525593_3889213912238802247_n — vuible.com

When I’ve been away from blogging for a bit it’s really hard to get started again.

I keep thinking…where do I start?

I’ll have a good day and I will start to write, and get overwhelmed….well I don’t want to mess up a good day, now do I?

Then I’ll have a string of bad days…oh yeah…we know those….and I think, I should blog about those, but I don’t want to sound like a broken record. After the last post I put out, I thought, Gosh…same crap, different day. Not completely, no two days are ever completely alike, but you get my drift. Sometimes people forget a Chronic Illness is called Chronic for a reason. For me, I do understand that….I know my illnesses are not going away, maybe they will get better, maybe worse…. but going away…don’t think so. I do not, however, completely understand it when they change. And lately, they have changed, a lot. Do I want to talk about all of that….well I have talked about some of it, and I’ll probably mention more of it…some I’ll probably mention later….oh you know me, I talk about everything. It will all come out eventually.

Mostly my moods have been, well, in the crapper. Hubby and I and the furry babies to have fun. Laughter is the greatest isn’t it? But the migraines and vertigo…..the fear….the fear…it just doesn’t go away. I’ve had so much pain and vertigo over the last few months, I live in constant fear. and, pardon the pun….but that scares me.

11752433_10206969399934708_5387599046344407404_n — healthshire.com

I know you all want to hear about my complete melt down where I felt like I should have been committed…I now understand what they mean when they refer to people having a “nervous breakdown”. But really, do you really want to hear about that? Tell me if you do, and I’ll tell you about it…just know I’m OK. I didn’t hurt me or anyone else. I just kinda flipped out…yelled, screamed, cried…all at the same time….and did it some more. Then I was exhausted…slept…and cried a lot the next day too…..

I can tell you a few things that I’m pretty darn sure contributed to it….maybe you won’t worry so much after that.

I was on a certain medication for my migraines, it is also an antidepressant. It wasn’t working, so I went off of it. I was not on high enough of a dose that I should have needed to taper off of it. I think that was wrong. I crashed right after I stopped taking this drug.
I have a lot of crap going on. Still having very intense migraines…A LOT. Like almost every single day. And vertigo, the same thing. To the point, I hate leaving the house. Did I mention fear?? I have been leaving more, and most of the time I have a vertigo attack when we are out. I’m starting to get less and less freaked out by this. Just get me in the car, and I’ll deal. I’ll talk more about my vertigo attacks sometime in the near future, they have changed a bit, and my treatment for them has changed a bit. I should share some of that. However, I’m having these spins when I turn over in bed, it scares the crap out of me. I’m asleep, I wake up a little…kinda…go to turn over and BAM..vertigo! It doesn’t last long, but it is terrifying. Sometimes it does last…so I never really know, but most of the time, it’s just a few seconds. There’s other stuff too. I’ll tell more later. It’s kinda interesting if you’re into that kinda thing….you know, sadistic.
Menopause. Yeah, there are things about this that no one told me….why? Why didn’t my doctor tell me more about it? Do people just assume your mother is going to tell you everything? What if you don’t have one? Well this is a matter for a whole other post in itself. Yep…I think it’s time we dish a little bit about the big M. And I actually don’t have a lot of symptoms…golly, I sure feel for those ladies out there who have it bad! But one thing I am having recently, every month I feel like I’m going through my period. The mood swings…really bad, cramps…all the goodies, just no blood. Yes I said it! In October it will be 2 years since I’ve had a period, and this starts now? Pfft!

So….there ya go…..those things led to a melt down. “I’m sick of being disabled at 52!” and much much more!! I even hated my husband because he could take a walk and I couldn’t. Oh yeah, I was completely irrational, and feeling sorry for myself. No….I have been so ANGRY I have found it hard to live in my own brain. Who wants to live with those kind of thoughts all the time? Snarky, oh way beyond…ew.

I’m trying hard to pull myself out of it. And you know, I do a pretty good job of it. But outside factors have been eating away at my normal brain. This is when I decided to try what a friend of mine used to say she did, “Fake it ’til you make it.” She said she would fake the feeling good and put on a positive front until she really felt that way, and it often worked. So I decided to do that. It kinda worked. I had some good times during it. But I still had that …urgh…underneath. *umph* Still it did help a bit.

I combined that with a lot of deep breathing. *Ahh*

And trying to do more mindfulness…but it’s darn hard when your head is hovering around a 7 every day, spiking to a 9 many days. And the vertigo has decided it’s going to start doing this new funky thing where I suddenly feel like I’m falling down an elevator shaft…just free falling!!! What the heck??? I found myself clutching to Stuart and screaming….”I’m falling!!! I’M FALLING!!! PLEASE DON’T LET ME FALL!” Yes my brain knew I wasn’t really falling….or maybe it didn’t, it sure wasn’t telling me I wasn’t…..I sure felt like I was falling into an abyss. That is one freaky thing, I tell you. When they say people aren’t afraid of heights, they are afraid of falling…well duh! I’ve always been afraid of heights…well guess what, that terror comes out when I get this weird vertigo. It has happened a few more times and I’m better with it now (kinda), I can’t imagine what I will do if it happens and Stuart isn’t with me….because it is freaky….but less freaky than the first time (um…kinda). My brain is beginning to wrap the truth around the situation that I really am not falling, no matter what my vestibular system is telling it. *good brain, I knew you were one smart cookie*

Now that makes it kinda scary to go out in public. Can you imagine if I were in a store and suddenly I start screaming, “I’M FALLING!” Oh yeah….Call the cops, this chick is doing acid!

Soooo, any who, I’m completely losing my train of thought and going all over the place aren’t I?

See this is what happens when I haven’t posted in a long time. I think of all these things I want to tell you, and things just start tumbling out.

Maybe I should just stop for the day. If I don’t I might end up putting this down and then I’ll not get it posted and you will miss me. You do miss me don’t you? Yeah I know, I’m a little cheeky today. *wink*

Good – Bad – Ugly…. Sometimes it’s Pretty, isn’t it?

On July 13, 2015 By WendyIn Chronic Illness10 Comments

Thank you all for the outpouring of support and encouragement about my blog and writing and well just me being me.

The comments here and on Facebook, emails….well, everywhere…I was overwhelmed by the love!

I’m sorry I haven’t posted before now….I’ve had some bad and ugly days recently….there’s been come good and pretty times in there too, maybe not whole days, but I’ll take it!!

First right before I went to the appointment I’m about to talk about, I broke my pinky toe. Yep, I mean within the hour before, I caught my toe on my nightstand and OUCH!! I saw stars and everything. Pretty little stars. *snort* It’s been a while now…it is still slightly sore, but it has all healed, finally!! It did mess up walking on my hip a bit though….same leg. But I didn’t fall!! Good thing!!!

I was very excited the beginning of June I saw a new neurologist here in Charlotte. She runs the Carolinas Headache Clinic in Matthews, NC…so it really isn’t in Charlotte, but it is so close it may as well be. The first appointment I had with her she spent over 2 1/2 hours with me. I don’t know if that is her normal time for a new patient or not. I know she sets aside a longer appointment for a new patient, but I was also her last patient for the day so she took her time. She gave me a very thorough exam and we talked at length about my medical history. She was very interested. I was very impressed. I love my neurologist at Duke, who also specializes in headache pain (my doctor at Duke recommended this doctor, they know each other well).

As much as I have loved my doctor at Duke, I think this doctor will be able to really concentrate on me more. She won’t be so over whelmed with all the influx of patients from the system at Duke. (I hope that makes sense) The doctor here is very interested in my Chronic Persistent Daily Headaches. (I have a headache all the time, it ranges from about a 3-5 on a scale of 0-10 pain scale, I have had this headache since I was 11 years old, right after my first migraine) She believes if we can break this headache then we can break the migraines and cluster headaches. Wouldn’t that be nice?

She started me on a new medication, it was to hopefully help with the daily pain of my head and my all over pain. Unfortunately, it hasn’t worked. However, I don’t think we can judge it fairly. I am on a drug called Limbrel, this helps with inflammation and I had problems getting my prescription for over a month. (long story short…the doctor faxed in the prescription but the pharmacy said they never got it…this happened over and over, finally they got it straight…why it took so long, well I have no idea, but I finally have it! 3 months worth, thank goodness. I had no idea how much this was helping my joints and all over pain, I was having trouble typing my joints in one of my hands were hurting so much.)

The past month has been filled with the worst migraines. Let me give you a little run down….Out of the last 25 days I’ve had 22 migraines, 1 cluster headache, and 15 attacks of vertigo. On July 2nd a vertigo attack started around 3pm and lasted until after 3pm on July 3rd. (July 2nd was my birthday…I will just have to celebrate 364 Un-birthdays!! Want to have a Mad Hatter Tea Party with me??)

Can you guess why I haven’t been posting? Or reading my dear friend’s blogs?

I admit the depression took hold of me and jerked me around a bit. I think I had some reasons, even if I didn’t have Bipolar I disorder, but I admit my emotions do go a bit extreme because of my illness. The demons didn’t knock on the door, they busted it down! For a while there I thought I was lost. I was drowning, big time. I was having panic attacks, heck I’m still having a few of those. I’ve been having trouble going out of the house again for few of having attacks. I hadn’t been doing my mindfulness practice…except during vertigo attacks, and sometimes not then, sometimes I would completely freak out. (however, I’m relieved to say that most of my vertigo attacks have been mild, by that I mean slow rotation, they haven’t been rapid spinning….but I won’t go into detail about what they were like. Just know they aren’t as scary. However, I will just say….they are exhausting.)

I’ve been trying hard to pull myself out of the depression. The odd thing about this, the medication that the neurologist put me on is actually an antidepressant. I was really hoping it would help with this too. However, I think the fact that I was in a lot of pain, and had so many headaches and vertigo when the medication I was taking was supposed to be helping…well this was making me more depressed. Makes sense right? Plus I have a few other things going on in life that are stressing me out too.

Recently I’ve been diving into my mindfulness studies again, and trying to meditate. Meditation doesn’t fix things, but it just makes me be here. I was so caught up in the fact that I was in pain, that is where I was, I was hurting, angry, sad, scared, did I mention angry…oh you would not believe the anger that was popping up! wow! I hate it for Stuart the past few weeks. At least he couldn’t hear the even more snappy things I was saying in my head. ewww.

So, I’m focusing on just being here. I’m taking a lot of deep breaths, and I’m just trying to be me.

On a different note….I’m in physical therapy now to help my hip get a bit stronger and have more range of motion. I have a day in the gym one day a week and a day in the pool one day a week. The pool is wonderful. However, I’ve had to miss a few sessions because of the pesky vertigo. The last PT session, the therapist really showed me that I am not as strong as I thought I was, she kicked my butt!! Whew! However, I’m afraid that the new exercises that I have been doing have aggravated the back injury. I have been in so much pain. The sciatic nerve has been shouting at me. It’s not just yelling on my left side now, it’s screaming on both sides. I’ll talk to her at my next session tomorrow. I may have to go see the spine doc again.

Well….I can’t think of much more to say today.

I don’t know if I’ve covered good, bad, ugly…and a little pretty, or not. But there is some of all in my life.

Good….focusing more on mindfulness again.

Bad….vertigo, migraines, back pain…being really mad there for a while.

Ugly…umm, vertigo sometimes, and you don’t want to see my face when she’s kicking my butt in PT. hahaha

Pretty….My new headache doctor, she’s really pretty – but not as pretty as my Physical Therapist, oh my! The feelings I get from both my new headache doc and my PT.

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