Tag: Disability

Better day, kinda.

On By WendyIn Chronic Illness, Migraines5 Comments

I had a better mental day today, physical kicked my but!

No flash backs, and was able to really sit down and talk with Stuart.

My allergies are out of control! It appears I’m now allergic to my cat. It’s so hard. I’m determined not to re-home him, but I have to find an antihistamine that works! The pharmacist told me about a prescription one, I’m going to ask my doctor.

If this doesn’t work I’ll see if I can find someone to bathe him, or shave him. Anything!!

Right now I’m spending most of my time in the casita (my studio I rarely use, but that’s a different story). I’m lucky I have somewhere to go, I have a much higher understanding and empathy for those I know with a cat allergy.

It’s late again, and I’m awake.

I’m scared.

Not the same reason, thankfully.

I’ve been having vertigo on and off all night. Waking up in the middle of the night with vertigo really sucks!

So I’m scared.

I got the latest COVID booster and my first shingles shot (I didn’t know it was a two shot vaccine… Ugh). My shingles shot side is already so sore I can barely use my arm. The other side isn’t bad at all, I feel it, but it’s minor.

Oh I did a little bit of art today, that was nice. Not finished, and I’m just covering some boxes with a mixture of torn newspaper background, with paint added in a decorative fashion. Some intuitive art.

I also sent a special complaint about the security guard. I strongly incouraged them to give their security personnel better training on how to deal with patients, especially disabled patients, with an emphasis on dealing with invisible disabilities.

I didn’t say it, but the way I worded it let them know I’m an advocate for myself and I’m not afraid to have his they deal with the ADA investigated.

I may be afraid, but I’m still strong, and brave.. even if I don’t always feel it.

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Time for “Us”

On By WendyIn Chronic Illness, Invisable Illness, Meniere's Disease4 Comments

wendy-and-stuart-anniversary-12

This past Saturday was our 12th anniversary.  With my husband being my caregiver it is hard to find days where we can find time for just us without my illnesses playing a major part.  Saturday was one of those rare days.

Recently I’ve been feeling pretty darn good.  I have my days of not feeling well, my balance will be way off, and I’ll topple a lot, but for the most part I haven’t had any major vertigo attacks.  That’s huge for me.  I had a few days last week where I just didn’t feel good.  I was afraid I wouldn’t be able to spend our anniversary out of my recliner.  But I was surprised.  I woke up feeling good, so we headed out for a day of adventure.

We had a few plans for the day.  Stuart asked me what I wanted to eat on our special day and I wanted crab legs.  So we found this little restaurant that is on a small lake.  I love being close to water.  I was such a happy girl when we were sitting there on the water I teared up.  After our wonderful lunch we walked around the lake and watched the ducks.  We took pictures and just enjoyed ourselves.  We then went out of frozen yogurt.  The whole day we flirted like teenagers.  It was such a good day, but it wasn’t over.

We stayed in a hotel for the night.  It had a big whirlpool tub, and was in the ritzy part of town.  We decided not to go out for dinner we instead went to Whole Foods and loaded up on the Salad bar and went back to our room.  That may not sound romantic but it was so nice to just curl up in bed with my hubby eating salad.  🙂

It was a very romantic day.  We had planned to do more on Sunday but we were both exhausted from our anniversary celebration.  We came home and just vegged.  I slept sooo much.  On Monday I was still paying for our little adventure and felt like I was catching a cold, but by Tuesday I was feeling well again.  Which was great timing as Stuart had Tuesday off and we decided to go back to the boardwalk and just walk around and watch the ducks.  We had ice cream outside enjoying the beautiful weather.  It was a very relaxing afternoon.  Sometimes even though I know I’ll pay the price later the price is worth it.

It is so very important to take the time to spend as much “us” time with your significant other as you can.  My husband is my caregiver.  Even when I’m too sick for days like Saturday (and Tuesday), we try to take some time for us.  We may curl up and watch a movie together, or have a special dinner, just sit and talk…anything that makes things special.  One big thing we do a lot is flirt with each other a lot.  I am not able to follow through on a lot of my overtures but it doesn’t matter, he knows I want to.  That is what is important.  It’s important that even though we can’t be as intimate as we’d like as often as we’d like that we let each other know we’d like to, but it’s okay that we don’t.  It’s okay that we just cuddle, that we are with each other, that we are so in love that not being able to have sex as much as we’d like isn’t going to come between us.  And it makes those special nights in a hotel all the more special. 😉

 

Confessions of a Chronically Ill Deaf Woman

On By WendyIn Chronic Illness, Deaf4 Comments

confessions

I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.

I envy people who look sick.  It’s just hard to be as sick as I am and look completely normal most of the time.  Others have no idea what I go through.  I know on the outside I appear normal.  I know it’s hard for people to understand why I can’t do things.  Sometimes it’s hard for me to understand.  Sometimes I feel if I looked sick it would be easier.

I’ve played the sick card.  This is very hard for me to admit.  There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick.  Normally that is something that would make me sicker.  Something I might want to do, but I know if I do it I’m going to pay the price afterward.  So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place.  Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough.  I can think of one.  There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card.  Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.

When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him.  Yes when I get mad I act like a child.  “I can’t hear you, lalalala”.  I’m sure it infuriates him.  I’m acting like a child.  And at the time, I don’t care.

I’m addicted to the internet and I don’t feel that is a problem.  I am basically housebound.  I can’t leave without someone else.  I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands.  I don’t have friends close by since we moved.  Even before we moved I had very few that I saw on a regular basis.  I keep in touch with my friends through the internet.  I read, I write, I research, I email, even my TV is through the internet.  Some people may think I spend way too much time on the internet, I don’t think so.

I really don’t miss working.  If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job.  I dreaded going to work.  I don’t miss it at all.  I don’t like the fact that I can’t work.  But missing my job?  No not at all.

I care what people think.  I keep being told, “who cares what people think?”  Well I do.  Why?  I have no idea.  I don’t like this part about me, but I really care about what people think.  I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac….  Yet I don’t like to go out looking bad.  I don’t want people to think I can’t take care of myself.  I don’t want people to think my husband isn’t taking care of me.  I care what people think when they come in my house.  (as if so many people come in my house)  I care what people think when they ask me what I do and I can’t give them an answer.  I don’t “do” anything.  I even dress up a bit just to go to the doctor.  Especially my therapist.  She is a lovely woman, so put together, and I want to look all put together too.  So I actually dress up a bit to go to my therapy sessions.  How weird is that?

I often don’t know how to talk about anything other than health issues.  My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking.  But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.

Often I have no idea what someone just said to me, so I fake it.  When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad.  It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway.  Often when I’m with Stuart I just stand there and smile and let him deal with the conversation.  It’s hard on me, not being able to participate, but it’s harder to struggle through it.

I love my recliner.  I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do.  I love this chair.  I got it when I got my hip replaced, I don’t know what I did without it!  I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier.  It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.

I don’t shower of bathe regularly.  Taking a shower or bath is an ordeal.  I have a safety issue with both.  Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem.  Taking a bath is easier, but it’s much harder to get in and out of the tub.  I’ve also had vertigo start with me in the tub a few times.  I have to have someone with me when I shower or bathe.  It takes a lot of energy out of me.  I often have to lie down and rest afterward.  I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks.  No, I’m not gross, I do wash up.  But taking a full on bath, takes a lot.

Sometimes I’ll wear the same “clothes” for days.  When I don’t feel good I wear the same clothes for days.  By clothes I mean a tee and shorts or sleep pants.  I will move from the bed to my recliner and back.  Who needs to change clothes?  Truthfully, I don’t think I could if I wanted to.  But sometimes I don’t change clothes simply because it’s easier.

I’m hard to live with.  I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.

 

Are there confessions you have?  Want to share?  Do you share some of mine?  I’d love to hear!

(photo by and of W. Holcombe.  All rights reserved)

Stop apologizing

On By WendyIn Chronic Illness, Hearing Impaired, Meniere's Disease1 Comment

I don’t often reblog a post from so when I do you know the person said something I think is important.  What Denise, from Hearing Elmo talks about is important.  We have to stop apologizing for our “normal”.  Please check out her site for many more important topics, Denise is an amazing advocate.

The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead […]

via My iPhone Lasts Longer Than I do — Hearing Elmo

Update 5.10.2016

On By WendyIn Chronic Illness, Meniere's Disease, Migraines11 Comments

bird on handicap sign.jpg

It’s been a while since I’ve written a simple update about me.  Other than the migraine scenario.

What’s going on right this second?  My head hurts!  Yes I’m still fighting migraines.  I’m also having vertigo again, every day for the past week.  Yesterday I had it all day long!  It would go absolutely crazy, then it would slow to just barely moving, then it would go crazy again.  This went on for 12 hours.  I’m starting a regimen of steroids.  I don’t like being on steroids because they think that may be what caused the Avascular Necrosis in my hip, but I’m desperate.  My headache speicalist and my ear doctor both agree that steroids is the best thing to stop this cycle.  So here we go again.

I finished my Vestibular Rehabilitation Therapy.  It was a great experience.  I hope it did a lot of good.  I say hope because I wasn’t having much vertigo when I was going through therapy.  I was amazed at how well I progressed through the exercises.  On the last day, I had a vertigo attack start right there in the exercise room.  All I could do was hold on to Stuart and my therapist and squeak out, “I want to go home.”  A wonderful way to close out an otherwise great experience.  Since that last appointment I haven’t been able to do any of the exercises without falling.  I’m sad and pissed.

I’ve decided not to do the gentimicin injections.  There are so many risk.  When I’m at my worst I will think I don’t care about the risk, I’m willing to try anything, but I just went through a month of very little vertigo.  If I have the gentimicin injections I may never have good days.  I might not be able to learn how to balance without my ears.  And it does nothing to stop the vertigo caused by migraines.  What if most of my vertigo is migraine related?  I would still have vertigo and have to fight having no balance system in my ears.

My new ear doctor is thinking about trying steroid injections in my ears to see if it helps. (one ear at a time) But we will wait until I’m really bad again.  (If things keep up like this past week, we’ll be talking about this fairly soon.)  Steroid injections don’t carry the risk that gentimicin does.  It wears off, so if it works it often has to be repeated every 3 months. Since they think my Menerie’s is autoimmune, this is a good diagnostic tool, and if it makes me feel better, great.  Therefore, this is a good thing to try before deciding on gentimicin.  My new doctor is not a fan of gentimicin, but did not say he wouldn’t rule it out as a very last resort.

I’m sad right now.  Things aren’t going well.  Too many times I feel I’m saying, “I’m having a bad day.”  There have been days I’ve been so angry I felt like I didn’t know myself.  For the first time in a long time, I feel handicapped.  I hope all of this is part of my health not doing well, added stress and maybe menopause.  Not my bipolar medication taking a nose dive.  We’ll have to wait and see.

I have a couple of questions for those of you who have seen a naturopath or holistic doctor; Did seeing one help you?  How did you chose which one to go to?  I’ve been thinking about seeing one to try to get my over all health better, but I have no idea how to figure out who to pick.

As always thank you for supporting and caring about me.

 

On my mind…

On By WendyIn Chronic Illness, Disability15 Comments

me pop and terry2
Left – Terry, my sister, Middle – My Pop, Right – Wendy, me

I don’t talk about my family often, other than hubby and the furry babies.  But there is something on my mind, something that may explain part of sadness.

My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it.  It was a much easier way to treat cancer than anything I’ve ever seen.  He has been doing well since then….

Until his check up in December, well even then they didn’t think anything was seriously wrong.  When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched.  It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it.  They did this the near the end of January.  During that procedure the doctor found more 2 tumors.

This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it.  Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him.  Now this coming Monday he will have RFA again on both of the tumors.

My father is 82 years old.  This is really hard on him.  It’s also really hard on my sister.  She is taking care of him.  She was taking care of him after his first surgery when I was put in the hospital for having seizures.  She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again.  For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this.  She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.

I haven’t been able to go see my father.

I can’t help either of them.

I can’t help but think….what if…

and I can’t help but feel worried, sad, and guilty.

 

When you have times when you can’t help others who you love, how do you handle it?

I shouldn’t feel guilty for being sick, but at times like this, I do.  Well, I feel guilty that my sister has to shoulder all of this on by herself.  I feel guilty that I can’t even be there to hold my father’s hand.  And I feel guilty that I felt better today than I have since I can remember.

After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.

I had a really good day…..it’s hard when I think about what my family is going through.

 

Chonic Pain/Ilness Photography 2015 Project Week 2

On 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

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.
stuart and wendy on steps
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 collage
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:
wendy before
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

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

callenges collage
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

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…..

It’s just so hard sometimes…

On By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness3 Comments

This is a stream of thought post.  I just needed to talk and get some things out.  So no fixing of grammar or anything.  One thing I do want to say before you read this…..I’m not suicidal.

photo by w holcome
photo by w holcome

Is everything just so hard right now or is it the life through steroids?

I feel like I’m slipping away.  I don’t know who I am half the time.  I’m really not handling things all that well….yet in the next moment I am….then I’m not…then I am…then I’m completely melting down and that has been the last two days, and

I just feel like a weight is on me that I cannot lift and it is crushing me,grinding me down further into the ground past the point of breath….I’m buried alive….why, why cannot I still just not die.

Oh I am so ashamed to feel this way.  I am just so tired.  So tired of feeling the ups, the downs, the hope, the devastation when life kicks me in the gut over and over.  And I can’t believe I’m actually writing these feelings out here where everyone can read them.

I do not feel like this.  I don’t.  This is not how I handle things any more.  It has to be the steroids messing with me…it has to be….

But then…there has been so much loss lately…so much stress…and I found out yesterday that it is worse than I thought.

When you can’t hear very well…..let’s face it, I can’t hear at all without my cochlear implants on and working, and for a while now things haven’t been sounding right.  So conversations with my husband have not been as communicative as they normally are.  I have always been so proud of how our relationship has been so good, because we communicate so well.  When you can’t talk a lot, communication seems to fail.  He thinks I hear things I don’t.  I think I hear things he said differently.  And things simply do not get talked about.  I’ve been feeling like we just talking much about stuff….and when we do, things just don’t get anywhere, we just get a bit frustrated because I don’t understand things….well…I really didn’t understand something, and I got really upset about it yesterday.  I lost it, completely broke down, and I’m still spinning about it.

I thought our finances were doing ok.  Not great of course.  Tight.  We do have a mortgage and rent and everything.  But I thought we were ok, not in the negative ever month, being able to pay our bills…paying off credit cards….ect.  We aren’t.  We are still in trouble.  I’ve been spending money recently.  I’ve told Stuart when I was going to, or asked him….he didn’t say…”we really shouldn’t be spending”.  No I haven’t gone crazy, but I’ve spent when I didn’t need to.  We bought Christmas for our niece and nephew that could have cost half what it did.  He said, “It’s what we would normally spend.”  This makes no sense to me.  I’m so distraught.  He said….that in about a year we should turn the house over to the bank.  What?  and we can spend money on gifts???  I can buy things for me?  NO.   I knew we were in real trouble when Kiki started having diarrhea Friday night and Stuart said, “Oh Kiki please don’t get sick, we can’t afford it.”   What?  We discussed this before we got a dog.  If we couldn’t afford a pet, we should not have gotten one.  In my opinion, that is one of the worst things a person can do, and I know Stuart feels the same.  (I know we would have found a way if Kiki would have needed to go to the veterinarian, but that comment really scared me.)  We are in this situation because of me.  We have not been able to sell the rest of the stuff out of the house, or get the house on the market because of me.  No, the house may not have sold yet, but we are nowhere near even getting it ready.  All because of me.  I have gotten too sick for him to leave me alone to go to Durham and take care of things.

Now, how can I not feel guilt about being sick??  How can I not feel guilty for every doctor appointment I have?  How can I not feel bad about every extra thing we have to spend because of my illnesses?  How can I not feel bad about the trip we have to take to Duke….tomorrow?

We were talking about taking me to special clinics to look for more answers…..HOW could I even think of this???  I cannot allow my husband to lose everything for me.  I cannot allow him to work so hard at his life and never be able to own another home, never be able to retire, never be able to do anything but take care of me!  NO!  I will die first.   Please, please, let me die first.  I simply cannot live with this guilt or with this lack of quality of life.  How do you choose?  How do you choose?  Am I selfish and allow him to sacrifice everything for me, to help me…where it may end up there is no help, that I will end up just like this forever.  Or do I stop it.  and say enough.  I accept that life will be like this.

I have ups.  We’ve seen this, over and over.  I have some good times.  I had them not long ago.  I went for over 4 months feeling so much better.  Then I have times like this.  Will I be like this forever, or will I have the good times again.  Who knows.  I cannot predict the future, and I have to stop making up the worst case scenario in my mind.

We have to get more stable financially before I can allow him to sacrifice any more.  He does so much.  He is so exhausted so much of the time.  He doesn’t even see that it is because of me.  At least he loves his job now.  It is not draining him.  He really enjoys it.  I don’t worry about him so much there, but am I jeopardizing it?   I hope not.  Right now that is all I can do.  I have to trust that his boss really is as understanding as he says he is.  I have to believe.  I know his hours are flexible….I hope they are as flexible as they are making them.  He does a lot for me.  They work around my appointments.  Sometimes he leaves in a moments notice when I have an attack.  He always gets in the hours, he gets his work done….he says that is all his boss is concerned about.  But I am concerned.  I do not want him to risk this job over me.  (they did just put him in charge of a project, so they must believe in him, right?)

I have to be more involved in the finances and everything as often as I can.  I have been hiding.  I have not been able to handle the stress of it.  I do not deal with instability.

I’m not dealing well with not being able to do anything.  With not being able to help at all.

I’m simply not dealing well.

I do so wish we had some help.  I wish someone would give us a maid for a day as a Christmas present.  Or better yet, a maid service.  We used to have one, got a great deal on Groupon, had a maid come in just once a month, and it was perfect.  For this tiny place, I’m sure it wouldn’t cost much….well for some.   But it would get the deep stuff done.  Things that just don’t get done…..oh who am I kidding, a lot doesn’t get done lately.   (I think that’s why Kiki got sick, she found something on the floor, I swear she’ll eat anything she finds!)

I’m tired.  So tired.  Between the spinning head and the aching back, sleep is hard.  And now my brain will not shut off….I worry.

Please Please tell me I will be able to deal with this better again after I get off of these dang drugs!   But then will the awful vertigo get worse again?  I live like that either.

Why does it have to be so hard????

Not the post I planned….

On By WendyIn Chronic Illness, Meniere's Disease6 Comments

So I had this post all planned out.  I had been working on it in my head.  I even had a few little illustrations to go with it.  Neat huh?

I really wanted to talk about what has been happening to me over the past few months.  All the stuff that has been going on…Physically, Mentally, and Spiritually.

I thought I could get it out.   I haven’t been able to write much.  To read much.  To do much of anything because of the vertigo.  Finally, I thought I could do it.  I started getting it together.   but that’s not how things happened…..

I started getting ready for bed night before last.  I had had a strange day.  I hadn’t had vertigo, but my ears felt off.  (if you have Meniere’s you can know what that means….or it could means something different for me….what they were doing, well, they felt very full, and my hearing was weird – best word I have – I thought that would stop when I lost my hearing and now hear through cochlear implants, but no, my hearing still gets wonky, unless of course I turn them off, then I just hear the increased tinnitus….oh yeah, I didn’t mention that, I also had increased tinnitus.)  I also had this weird fainting type of spell.  I didn’t faint, but I felt like I was going to, like I was hit by a tranquilizer gun.  It was strange.  I had to fight hard not to just pass out.  I could have gone to sleep, I guess, but it was too scary of a feeling, like if I went to sleep I might now wake up.  This has happened a few times lately, I have blamed the steroids, they can make your blood sugar drop, so I eat something and feel better.  This time was a bit worse, as it came on very suddenly, and I was hard pressed to even move……so….Stuart checked my blood sugar.  I’d just eaten a banana, my blood sugar should not have been low.  My blood sugar was indeed not low.  It was on the higher side of normal…hmmm.  Not that strange since I just had that very ripe banana, but strange since I felt like I was fainting from low blood sugar???  what on earth?   Well I ate some protein anyway, and maybe it was the placebo effect, maybe the spell was just ending, whatever…I started to feel better.   But I still felt off…and I admit, I ate more, I ate too much probably.  But I felt better.

A little while later I went to get ready for bed.  I was brushing my teeth and looking in the mirror and thought…why am I moving?  Then I feel it and think…”oh shit.”  Yep, vertigo.  No warning, no strange feeling, nothing….I was just moving….what the?

It was slow so I rushed to go to pee real fast but had to have Stuart help me to bed.  (I always try to pee really fast before it gets bad because I always have to go when it happens.  It is horrible lying there about to bust to pee and can’t move because of vertigo, but it happens every time!  And if I vomit, I will pee too, complete loss of control.  So rush to pee, if I can…..so strange how things have changed for me with this…I never would have considered trying to run to the bathroom when this started a just a year ago, now, well….things have changed….)

I got my meds in me and it looked like this wold be a short trip.  WRONG!  It was a long and bad.   Over 4 hours….slow, fast, start to sleep – wake spinning fast, terrified – have to go to the bathroom again!  can’t get up….bedpan, humiliation, back – pain! – ….FAST SPINNING – help….slow…..fast…..sick…sick….help….tired….guilt….sorry…..sleep….AHHH!…..slow….sleep…AHHH!……….

Now what?

I was supposed to be going down to 1 steroid a day the next day.  Yesterday.  I did.  I felt bad all day yesterday.  I hoped it was just that hangover feel from the night before.  Then..Last night.  vertigo.  just a little, all night, I just kept waking with the bed moving.  I handled it.

This morning I woke….AHHH! FULL FAST SPIN!   Stuart’s at work, and I have to GO TO THE BATHROOM!  and I do not mean just for my morning pee.   Oh hell.   Whoosh!  Whoosh!  Whoosh!  I can’t move.  Which world do I try to step in to?  They are moving so fast.  Whoosh!  Whoosh!  Whoosh!  Oh I am so sick.  More meds.  sick.  I have to GO!

I grab my phone….text….I can’t see the key board, it’s all a blur…WHOOSH!   I type, “Spinning”  I think…and hit send to Stuart.   I don’t want to bother him, I want to be able to do this alone.  But how?  I know other people do.  How do they do it?  How do they go to the bathroom?  How do they survive without killing themselves (accidentally or on purpose?)   Since this has gotten so bad, I have always had Stuart to help me.  I’ve only had to deal with an attack a very few times alone.  That was so long ago.  It was so hard.  I don’t know how to not ask for that help from him.  How do I do this alone?

Soon I got a text back.   I don’t know what it said…..I texted….”help”  hit send.

Then I called on voice.  I only have to hit one button.  I did not have my cochlear implant’s on, so I could not hear anything.  I saw the little numbers start counting, I don’t know if he picked up, I just started talking.   “I’m not hurt, I have to go to the bathroom.  I need help for that.  I’m not hurt.  please just come help me to the bathroom.  I’m not hurt.  can’t get to the bathroom, really have to go…..”  then said I hoped he heard me and hung up.  I really wanted him to know I wasn’t lying there hurt, but I needed a little help….then I waited….

and waited.   and held on as hard as I could.  I knew I would soon have to try to crawl to the bathroom…..but then what?  I wouldn’t be able to get up on the toilet…..what was I going to do?   I kept trying to think.  the bedpan was in the bathroom.  Ugh! The trashcan?  maybe.   I’m going to kill my back even more.  “I have to GO!  I’m going to soil myself soon.”   (I really think I may have ended up soiling myself before I would have made the decision what to do.  My body wasn’t going to wait much longer.)  Then Kiki jumped up and ran out of the room…..”Yes, Stuart is here.  Whew….”

So I was saved the humiliation of soiling myself, or the possibility of injuring my back more from trying to get to the bathroom by myself…..or injuring myself any number of other ways.  *sigh*

The vertigo won’t go away.   It slows way down….right now I feel like I’m on a boat with the constant rocking, and if I move, it gets MUCH worse.  I will have full blown spins on and off.

I had an appointment scheduled at Duke tomorrow with my ear doc to get his opinion about all of this, now I can’t ride in the car for that long.  We rescheduled it for…I think Stuart said a week or so out.  I have increased the steroids and am hoping I can get this under control enough by then so I can ride in the car to get there.    What can he do?   I have no idea.   What is causing this?  I have no idea.  I thought I had an idea, but now, nope.   Where do I go from here?   if my trip to Duke comes up with nothing….I don’t know.   One step at a time.

I can’t control what happens in the future, but that doesn’t mean I can just sit around and not do anything.  I have to consider Stuart’s job.  His boss has been so very understanding, but this is above and beyond what we ever thought he would have to be doing.  First I injure my back and now this?   I’m afraid he is being understanding on the outside and not so much on the inside?  Stuart is getting his work done.  He works the hours, just often not normal hours.  Today he is now working at home.   He is going to talk to his boss again about this to ease my mind.  He likes this job, I do not want to jeopardize it because of me.  But I do not know how to take care of me during the attacks by myself.  If they are short, fine.  But when I can’t walk all day long because of it?  How do I go to the bathroom?  Get water?  food?  We can’t afford to get me a helper, and who would know when I’d need one?  (I’m spouting off out loud here, I’m not looking for answers…..just where my mind is right now.)

The guilt about this eats me up.  It is crazy to feel so guilty about being sick.  I didn’t do it.  I have no control over it.  Yet, this is the one thing I find the hardest to deal with….guilt.   I am so very sorry to be such a burden.  At times I will feel like I am past this, but then things like this happen and how can I not feel like a burden.  How can I not feel guilty?  How can I not feel that I am causing so much trouble for my husband?   Believe me I could give a list here of a lot of things that need to be done, that he needs for himself…..ect…..that are neglected because of me….because I’m sick.   Guilt much??   I’m working on being much more gentle with myself, non judgmental….I’m better than I used to be, but really, I don’t know if I’ll ever get rid of all of the guilt.  It’s a work in progress.  I can say it is much better than it used to be.  I don’t hate myself, and I don’t think of myself as a complete failure.  Those used to be huge thoughts that ran through my mind.  Those are thoughts that I hear from many people who are chronically ill and have lost so much of their independence.  That’s a sad thing isn’t it?   Ah…things I’ve been thinking about…..I’m doing really well with much of this stuff.  I really do like me.  I try my best to be a good person and I think that’s pretty darn important.  It’s just that my body often needs help, and I feel guilty about that.  Perhaps, if my husband had help it would be easier.  …..eh…..going in circles there aren’t I?

No…this isn’t the post I planned to write.   It isn’t well thought out.  It isn’t illustrated.  It doesn’t give a good account of what has happened.  It’s just me.  Telling you a little bit how it is now.  In this world of mine.   would I change things in my world today.   yeah, can’t say I wouldn’t.   Do I still love my life….most of it yeah.  This vertigo stuff can hit the highway though…..but I will accept it.  I have to.

This is just how things are right now.  Just right now.  they were different a moment ago…they will be different in a moment.

I’m actually much calmer about things and I’m dealing mentally with things better….yeah I know it doesn’t sound like it….but really I am (probably won’t be when the steroids start kicking in full force again, but hey, at least I’ll know it is the steroids, right?  this last round made me a bit crazy….I do not know what if feels like for a “normal” person to be on a high dose of steroids, but it makes me feel like my bipolar medications aren’t working, however, you sit there and think….is it the steroids or do I really feel like this?  ugh!)

It has taken me all day to write this.

I hope it makes some sense.

I’m going to try to write more often.  I need to keep up with what is happening to me.  So these posts coming up may be up and down or start to sound the same or something….but I really need to just write about what I am going through….

hope you don’t mind….

I might just need someone to listen.

 

What is wrong with me??

On By WendyIn Bipolar, Chronic Illness, Meniere's Disease9 Comments

image by w. holcombe
image by w. holcombe

What is wrong with me?   This is the question I kept asking over the past couple of weeks.  Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart.  But I don’t think that way….or I try not to.  I accept things as they come.  I just roll with the punches.  Yeah.  Well that isn’t how it has been going.  I’ve been trying.  But I’m not succeeding right now.

It has just been too much.  This post is about the latest….

I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!

It started the beginning of this month.  I would just suddenly have this whoosh feeling and I’d start to spin.  It just felt different.  I can’t explain it.  Maybe it was different because I had been feeling so off for so long.  I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving.  Maybe?  Really, who knows.  But these attacks…they are different.  The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.

One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time.  We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo.  If I had been standing, I would have hit the floor hard!  It scared me so much.  Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over.  It scares me just thinking about it.

When it started I had just had a day completely vertigo free.  I could focus on a spot without it moving, the boat stopped.  Relief.

What happened for that day?  What happened after that day?  These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard.  I’m an inquisitive person.  I’ve always been that way, I want to know how things work, I loved science and proving theories.  Telling me that no one knows something about a scientific problem is hard for me.  I keep thinking I’ve accepted that.  And I have.  I have.  But I don’t want to.  I want it to change.  I want to know what is happening to me.  What changed?  And more than that, I want for people to stop asking me that question.  It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone.  I want to just scream….I DON’T KNOW!  Please NEVER say to a chronically ill person, “Why can’t they do anything?”  of  “I think you need to find a new doctor.”   You have no idea how many doctors I have been to and still continue to consider.  However, this is my life.  It is my decision how I get treated.  You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do.   (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so.  That’s different, we are going through the same crap…excuse my colorful language.)  However, normal people do not understand.  Heck, some people who have this don’t understand, it’s different for different people.

So….off that soap box and pity party….

I went to the doctor on Wednesday.  Yes the doctor here in Charlotte.  He really doesn’t listen.  I will not go back to see him.  I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor.   (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.)    They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s.  I will be doing some research, but if he is the head guy…I am up a creek.  Let me tell you about my latest visit.

I did get an appointment rather quickly, that was nice.  We got to the office and I had to be taken in by wheelchair.  They thought I was in a wheelchair because I had back surgery??  I never said I was having back surgery.  I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?)    He asked me about these attacks, how long they have been happening and what they were like.  I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning.  He asked me to describe the attacks.  I looked at him and said.  “You know what a Meniere’s attack is like.”  Yes, I was a bit snarky.  I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there.  He said “Yes, but I want to know what your attacks are like.”  I started to tell him, I told you last time, but I didn’t.  I said, “severe rotational vertigo, severe tinnitus, want to die!”   “Yes, that’s normal”  DUH!   Stuart them tells him how much my eyes have been vibrating with these attacks.  I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before.  My eyes really dilate, and I have nystagmus really bad during an attack.  I need light or I get really sick, but lights also hurt because my eyes are so dilated.  My eyes hurt so much after just a few minutes, after hours…well dang!  So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating.  Poor thing felt guilty he hadn’t really noticed as much before.  I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.

Back to the visit.  The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast.  I tell him…that makes me sick.  He keeps telling me to look at it.  I look but I will not look fast.  I am not going to throw myself into a spin in his office just to perform his little test.  (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast)  I had already taken 3 or 4 Valium that day because of the attacks I’d already had.  I can tell he gets frustrated with me when I don’t do the test as he wants.  oh well.  He asked what I take for my attacks, I told him, Valium and Phenergan.  He said, well that’s the best.   He asked if I had this happen before.  Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast.  My ear doc had to put me on steroids that tapered off slower.  He said, I told me I only have attacks 2-3 times a year.  I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day.  He said nothing.  He paid NO attention to that.  He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating.  He really heard nothing I said about how this is affecting my life.  He heard nothing about how I can’t focus on things without them moving.  He DOES NOT LISTEN TO ME!  Why?   Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him?  He doesn’t understand what this is doing to me.”  Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….

So he wrote me a prescription for steroids.  Good, that is what I expected.  He told me the dose and I thought…That’s High.  He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose.  He ignored me…”If you have a problem call me”  I just told you I have a problem! Listen to me!  I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin.  He said, “This won’t make you spin, but if you have a problem, call me.”  Hmmm, are you listening to me?

I got the prescription and started it.  The next day I couldn’t stop crying.  I looked that the dosage….and the tapering.  60mg a day for 14 days!  then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea.  14 days then 2 days each…that’s a pretty fast ramp down!  and 60mg of prednisone for 2 weeks!!  I will be going out of my mind!  It is very hard for me to deal with these emotional swings with my bipolar swings anyway.  It makes me feel like I am having bipolar episode, and it drives me crazy.  I can’t trust my own emotions.  I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff.   So, I thought….I can’t do this.  I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there.  It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different.  I’m following his dosage.  He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect.  a much slower taper down, and I know I did fine with it.  I will also be taking half as many pills.

Is this the right thing to do?  Should I be treating myself?  In this case….I don’t really think I’m treating myself.  I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up!  But I know my tolerance to them and I know they do mess me up.  I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive.   I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing.  We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me.  (My point…as I say in my disclaimer, I am not giving medical advise.  I do not advise anyone to ignore what their doctor tells them.  This is just my story.)

Good news.  The steroids are helping.  I’m on day 3 now.  The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot!  Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night.  Yesterday, I didn’t have an attack.  I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long.  So it looks like things are getting better day by day.  Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.

that is the story of my last couple of weeks.

It has been hard.

The last few months have been hard.  Physically and Mentally.  It has also been hard because the doctors I trust are 300 miles away.  I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings.  I moved here feeling so much better, with so much hope, so much promise.  I thought I was ready to handle anything life through at me.  I was wrong.  I’m still trying hard to live in the now.  I’m trying to accept things as they are, and accept my feelings … nonjudgmentally.  that is a BIG thing.  I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright.  I’m just not there yet.  Right now I’m hurting, and I need to be here for a little while, and stop judging that.  I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now.  And I’m not going to judge that.  I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.

Deep Breath.