I thought and thought about this prompt and could think of 5 people, but realized after I invited 2 of them it wouldn’t be fair to the other 3 to have them in attendance, unless they just wanted to talk among themselves.
The first person I would invite would be my mother. She died in 1993.
The second person I would invite would be my husband.
The two most important people in my life, never met.
This is the dinner party I would like to have, I’d like the man I love, to meet my mother.
Of course, now I’m crying and have no idea what else to say in this post…..I’ll try and muddle through…
Let me tell you a little about my mother. My mother and I were always very close. When I was a child we played together, as I got older we told secrets, she always knew when I really needed to talk and she’d take me for a day trip to the beach. I didn’t realize if until years later, but those trips were huge bonding experiences for us. Never did we leave to come home without me unburdening to her whatever was on my mind. She was the kind of mother that all the kids wanted to be around. I often came home to find a friend talking with her. They hadn’t come to see me, they wanted her advice.
I think back over the past 19 years and for many of them I simply can’t believe she wasn’t here. I actually remember her at different events. I can almost hear us planning my wedding. But alas, she wasn’t there. My husband’s mother died just months before we were married. We had an empty seat for both of them beside our fathers. We walked down the aisle together, when we reached our parents I gave one of my flowers (I carried Calla Lillis) to my Stuart for his mother, and I had one for mine….we put them on the empty chairs, and kissed our fathers and continued up the aisle to become joined as husband and wife.
The next day we came back to the park we were married in to have photos taken, they were catching and tagging humming birds. Both of our mother’s loved humming birds. So much so we included the theme in our reception to include our mother’s presence. While they were tagging the migration they allowed me to hold 2 hummingbirds. Yes, I actually got to hold them. You see after they are caught they have to give them sugar-water and they sit in your hand a moment to warm up before they can fly away. We took this as a sign that our mothers were pleased with our union….a little hello if you would.
Can you blame me for wanting my mother to meet this incredible man who has taken care of me so unselfishly, so lovingly for so long now? My mother was my hero growing up, my husband is my hero now!
I know they would adore each other. But to have one dinner together, can you imagine?
All the stories about me growing up? The silly stories Stuart would share with my mother?
The proud moments a mother likes to share.
To share our wedding photos with her….to tell her all about it….
My mother finally seeing me stable (I had been diagnosed with Bipolar I before she died, but I was not completely stable until after she passed away.)
My mother seeing me happy, finally very happy, in spite of what my body is going through, I am happy most of the time……that is if I could stop crying!
and to have my mother hug me and tell me that everything is going to be alright…..oh what I wouldn’t give for that.
I know many of you will say she does see me, and she is always here with me….yes, I know.
But to have my mother and my husband actually meet, and have dinner with me…..that would be the ultimate dream for me.
Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.
Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer. What can I offer. I can’t even hear them to talk to them. I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests? I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!
This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!
I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!
I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.! I was so busy….I didn’t think it would end…
After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.
I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece. But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.
Now I’m falling apart….and I’m angry at myself about it!!!?????
I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad. I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me! I’m angry I can’t lose weight….I’m MAD AS HELL!
I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that. However, I know me, and I will. I’ll get it together, and get myself another lease on life. Life is good.
I have such a good husband. It can’t be all bad. I must think of the good days.
**warning to readers….this is a graphic letter. Things I really wish someone would have told me and helped me with, some may be offended by the frankness. There may be some major mistakes in the writing, I tried to read it over, but just couldn’t.
Dear 16 year old me.
Hi Wendy….You won’t believe it, but I am now almost 50 years old.
I know you are confused. I know it’s hard to believe that I could be writing you from the future, but please just sit back and listen. I hope to help make these coming times just a little bit easier. Please know, I love you, with all my heart. You will go through times that you don’t like yourself very much, but know you will. I’m just hoping you can start a bit sooner.
Recently you have been very depressed, and confused. Some days you are very happy, a bit euphoric even, and other days you don’t think you can carry on. Everyone thinks you are going though normal teenage hormones, just growing up. You are, but you are also dealing with a bit more. You need to make someone listen. Your mother has always been your best advocate. Sit down with her, talk honestly. Tell her just how depressed you have been and that you need to see a mental health professional. I’ll be blunt, you have Bipolar disorder. Don’t worry, you can be treated. But hopefully, you can catch this much earlier than I did the first time around. In my time line you went through many hard years and many heart breaks. You still live with the fall out from those times. If you can get help now perhaps your life can go much smoother. (much easier.)
If you can’t, there is one thing I suggest…STRONGLY. Be careful with your sex life. You will feel, once you are “soiled”, it isn’t worth the fight. It is. YOU ARE! You will lose your self esteem. You will lose so much. When you get into therapy, finally, you will have a good therapist, but she will not understand. She will acknowledge your past problems with abuse and see you think a man will only care if you give yourself to him. She will say. Sex is ok, but only if you really want to do it. You will often feel that you really want to do it. Please Wait. Wait many times. Wait until the relationship is so much more. Do not jump into a sexual relationship until the relationship is more than just sex. Please take this more seriously than you can believe. It will change your life!!!
Stay close to your mother. Give her a break much more often than you do. Take her off the pedestal. She can’t read your mind, STOP being so passive aggressive. It carries on to other relationships and you don’t need that. You lose her much too early. She encourages you and stays by your side through everything, but unfortunately she doesn’t live to see you completely stable. Savor the years you have. You will be so very close, but you do put her through many worries. Try to lessen those for both of you.
You will start to have some health issues. Hearing issues, vertigo….you think you are having food poison many times…there are many breaks between these sicknesses. You are heading toward a hard fight with a hearing disorder that will cause a lot of balance issues. There really isn’t anything they could do if you found out earlier. So don’t sweat they you don’t find out until later. But if you find out earlier, it might help you in your career.
Dare to be braver. Work harder on your art if you REALLY want to. Don’t be so scared to fail. You will only have a few years to be able to work at this. So if you fail, it’s not a big deal. But if you succeed, and I really think you could, think of how you would feel about you! I believe in you. Looking back, you could have done so much more. Work on your muse! Find what inspires you the most! (oh and in college…start out as an Art Major. add in Art Education, but don’t waste time, if you do you will run out of financial aid before you know it and will not get the education you deserve.
You will have some health issues that change your life….so you change your life to go along with it. You still have a good life. You have a wonderful life, even with everything that you go through, you find a way to make your life meaningful.
You do meet the most wonderful man, and have a joyous life with him…but it won’t happen until you are in your late 30’s, you marry at 41. Do not worry. It happens. Don’t fret. And don’t think there is something wrong with you. Focus on your happiness. This man will stand beside you through all your health issues. You will have a better relationship than you ever thought imaginable. He is worth waiting for.
Focus on YOU.
Study things you want to learn.
Dive into your ART.
Study Yoga…you will love it.
Become as healthy as you can, you will need it later.
Take care of you…And trust your heart…don’t listen to those who are just looking for fun for the moment.
Hopefully, if you listen to this, and get treated early, you will have an easier life.
Don’t take things so seriously….however, when you believe in something, don’t let others pull you away from your beliefs. In that same vein….do not get too caught up in other people’s beliefs without really looking into them. Make sure they are what you believe deep in your heart, and the that the facts are sound.
Question everything.
Love Deep.
Laugh Often.
And Cry Less.
Look for Beauty.
And appreciate Life.
From your future self, who hopes things turn out a bit differently.
This is on the ugly side. Probably a post with too much information for some. It’s very emotional, and I’m not exactly sure where it will all end…
"Turmoil" computer graphic wendy holcombe - 2012
I’ve noticed a lot since I have been diagnosed with Intracranial Hypertension that my emotions are a bit out of whack, and I haven’t had the best filter on my mouth. I cry a lot of the time, and try to be as strong as possible. I feel alone and keep reaching out trying to ask for help, but just keep alienating people.
I continue to help others if they need to talk, if they need a shoulder…but my shoulders are just so soggy lately. There are days I feel I have it all under control, my headaches are better, my vision is better, I’m getting around a bit better, so why am I a mess? Why can’t I relate to people like I normally do?
I asked the doctor, is it the condition, the medication side effects, one medication mixing with other medication, do we need to adjust my bipolar medication??? I was told, “Yes. Maybe. It’s complicated.” then I was told, “I’m sorry your condition is not easily fixed.”
Well that’s all well and good, but I’m losing everyone around me. I feel like I’m going insane. I’m so alone, and scared. It’s getting to the point that the only one who will put up with me is my husband. At least I think I do remember to tell him how much I love and appreciate him.
Then the terrors start. I’m terrified of being alone, not all the time, just some of the time. It’s more than that, I’m afraid of being without my husband. (again, not all the time, sometimes I feel very capable, then other times…Panic!!!) What if something happens and he’s not here and I have vertigo and can’t stand up, and can’t stop throwing up, and …… panic, panic….what if I’m upstairs and he’s gone and I can’t go downstairs and my blood sugar is too low and I need to eat, but can’t get down the stairs safely….panic, panic….what if….I Fall??…..what if…..OH remember to BREATHE! There are just so many things he does for me, he has no idea how much easier he makes my life. Often just by being here so I know if I need him, he’s here.
So, what do we do first…how do we sort this out? Already 2 medication changes. Soon another. This week I see my Psychiatrist to see if there is anything we need to change there. Is there any medication that is working against anything. Should we add something to help ease some of this? Will it help?
Does anyone really have any idea?
I do have bipolar I disorder, I know what it feels to not be myself. I know I’m not going through a depressive or manic swing, but I know I’m not myself, and that tells me I need to back away. Unfortunately, I wasn’t listening to that little voice when it first started screaming at me a few weeks ago.
Will I have any friends left at the end of this. I admit I didn’t have many at the beginning. Having a chronic illness for this long is not good for keeping good relationships. No one’s fault really, it’s just very hard. But I’d like to stop alienating the few people I do have supporting me.
Right now, I plan to finish this months writing challenge then take a Hiatus from my blog for a while and try to get this straightened out. I don’t feel like I’m myself lately, and I don’t want to be putting words out there that aren’t really want I want to say.
I hope those of you who have been on the confusing end of my emotions recently can find a way to understand and forgive. After the 1st of May, I plan to just take a break, I hope to see you soon.
I hear many quotes that I get inspiration from. The one I’m continually inspired from is one I heard over and over again from my mother, “I Believe In You.” After she died, it was a long time before I heard those words again. Now, I’m so grateful to once again hear the same words over and over from my husband.
Those 4 words resonate through my very soul.
“I Believe In You”
Because of these words,
I was the first person in my family to graduate college.
I had the courage to seek help for a mental illness (Bipolar Disorder) that was tearing me apart.
I had the courage to become an artist and show my artwork in a gallery and have a one person show.
I have had the courage to face my chronic illnesses as they have been diagnosed, including Meniere’s disease a vestibular disorder with sudden vertigo and hearing loss, and most recently Intracranial Hypertension a disorder of the brain causing high cerebrospinal fluid. (please know these are very simple explanations of each of these disorders)
I have the courage to face each day as it comes, make the most of each good moment, and realize that at the end of my days I will look back and all these moments will have added up to be a pretty good life.
“I Believe In You.”
Everyone faces their own battles, we all need someone to believe in us.
Who do you believe in?
Have you told them?
Make sure to let them know.
When you are facing a hardship, fighting a battle in your life, it’s easy to give up when you don’t think anyone believes in you. When you have someone pulling for you, someone who believes in you, it’s much harder to give up. Courage comes from belief. Belief in yourself, for some belief in a higher being, but sometimes, we need a little help from someone else. We need to feel a human touch, someone who can reach out and say…”I Believe In You.”
My wish…Go out today, and tell someone special you believe in them!
For some time now we’ve know that I may have a type of high Cerebrospinal Fluid Pressure, where it rises too high then blows out and goes too low.
I mentioned that they caught it in the high level this last time, and we have a name for it. Idiopathic Intercranial Hypertention (this is a link to a Wikipedia article if you are interested). I’m going to call it Intercranial Hypertention of IH while I’m talking today…Okay?
I’ve talked about some of my symptoms. They don’t know if they are being caused from the IH or from the medication side effects, yes they are that similar. Can you believe that? I will be going back in soon for another Lumbar Puncture.
So why haven’t I felt like this before. Some times I may have for short periods and just thought a Meniere’s attack was coming on, or any number of my problems, but remember, I’d have blow outs. Literally, my spinal column would start to leak in weak spots and my pressure would fall, often way too low and I would have those symptoms. If you’ve been following me for long, you know what that’s all about.
This time, not only am I having balance issues, but it’s affecting my vision. Remember, I’m losing my hearing at a pretty rapid rate. Now, I may be losing my sight.
I had not read much on this, I thought my pressure would have to be much higher for this to happen, then I read an article on the Intercranial Hypertention Research Foundation site last night that startled me. The person who wrote it could have been interviewing me. Here is excerpt from the article about visual symptoms,
“The most common visual symptoms are:
Transient Visual Obscurations (TVOs): These are often described as momentary grey spots, or a dimming or blackout of vision that occur in one or both eyes, especially after a change in position (such as standing up from a seated position). TVOs are the most frequent visual symptom but are temporary; vision generally returns to the affected eye or eyes after the TVO episode, which lasts approximately 30 seconds to a couple of minutes. They may also be accompanied by pulse synchronous tinnitus.
Blurred vision: Blurred vision may be a direct result of papilledema and swelling in the surrounding retina. It can also be the result of a retinal hemorrhage.
Double vision (diplopia): Double vision can be due to sixth nerve palsy.
Decreased contrast sensitivity: Over time, chronic IH may affect the ability to perceive changes in contrast. Some with IH report examples of this decreased ability, such as the grey or faded out appearance of black text against a white background. ”
It does mention that ” in many cases, the surgery successfully relieves optic nerve swelling and improves or restores vision.” That was very encouraging. I’m also very hopeful they will get this under control before things get too advanced, but I have not been feeling good for some time now.
We all know acceptance of a chronic illness is a big hunk of the battle. Once you accept it, you can do so much more to make your life more tolerable. But how can I accept this when I don’t understand it yet? When I feel so confused so much of the time? When I’m told, who knows, you may have to have a shunt. Oh, that’s great to hear. A shunt. More brain surgery to put a tube in my brain to drain fluid to my abdomen do they can control how much CSF I have all the time. So if I have a shunt, will this interfere with me getting a cochlear implant?
More questions to ask the doctors. And the new headache specialist hasn’t returned Stuart’s calls. Not feeling good about that!
So right now, there are so many unknowns. I had a strange vertigo attack yesterday. It was a positional attack, but it wasn’t really. If I got in one position it got much better but it was still there and everything was doubled. I was freaking out. In full panic mode. Sweating, and these little cries coming out of me, saying something is wrong, this isn’t right….stop, please stop….and trying to slow my breathing…but not doing a good job. Unfortunately, we were downstairs, and Chris witnessed most of it. I was mortified. Finally, I calmed myself down, if I can get to the point where I can just chatter, about nothing, just talk and talk…I can let it go and even if the world is moving I’m somewhere else.
Afterward, we came upstairs. For most of the night I was off. The walls are wavy, the floor it tilting, I’m living in a Fun House, but I’m the only one who sees it. For days I’ve been telling Stuart that I feel like something bad is going to happen, someone is going to die. Truthfully, I thought it was our dog. She’s 19, she is doing well, but in dog years she’s close to 100. Last night I broke down and was convinced I was dying. I told him how sorry I was, that I know I’ve talked about giving up but I promised I hadn’t given up on him that I was still fighting but I was sure I was dying. At first he tried to say no, but then he knew he just needed to talk to me. I told him what I wanted at my funeral, or rather who I didn’t want there…I want a party instead of a normal funeral where people remember me and have fun, I told him to display a photo of me when I was skinny, not a recent picture. I wanted a bouncer at the door, and everyone had to give their name, if someone gave their name who was on the NO list, they were to be told, “I’m sorry, you should have visited her when she was alive, you are not needed here now.” (Yes, I’m telling him all of this with slurred speech and I couldn’t focus well, but I was sure about all of it.)
So he asked, if you were possibly dying what would you like to do before you die? The only thing I could really think of was to renew our vows. I told him somewhere near the water….a nice lake, or the beach, or a water fall (I bet that would make me dizzy though). He was all for it. He didn’t realize that I wanted to renew our vows so I could point out to him that they were until Death Do Us Part….and I wanted him to carry on without me.
Let me say right now, I DO NOT think I’m dying. (Well, no more than anyone else is.) But sometimes lately, I feel like I must be. My brain isn’t working quite right and that is the only thing that makes sense to me, but then again….my brain isn’t working right!!!
I have been in touch with both my psychologist and my psychiatrist….I’m making sure everyone is looking out after me through all of this because I know my brain isn’t working just right. One shouldn’t see things, or forget things, or not know where they are….it’s kind of freaky. I’m so grateful Stuart has the type of job he does so he can be with me all the time right now.
So I’m in a holding pattern right now…about everything
Right now, there are no good days. I may have some decent moments, but no completely good days. (I even told Dr. Gray that I feel like shit!) – actually Stuart was on the phone with her and she heard me in the background. I was trying to stop cursing, my therapist said, it’s probably not a good time for that. People under this much stress tend to feel better if they curse more. Alright!!! Stuart can no longer bitch at me for my language….but I am trying to tone it down..I do get a bit out of control….can you believe it? Me?
Titty Sling Update – I got too tired again trying on bras…and they let Stuart come in and help me, I’m sorry to all of you ladies who have to do it alone! Finally I begrudgingly picked one. I didn’t like it but it served the purpose. We walked out of the dressing room, and I pointed to a bra, and said, I wanted that one, but they were out of my size. Stuart looks up on the top rack…thank goodness he’s over 6′ tall!! and found one in my size. Once again I said, I’m just buying it! So we did. And it fits like a dream! I love it! But it’s white. ick. I can’t wear white with let’s say…..white. And it was on clearance – $9!!!! but no more in stock *sad pouty face*. We will be scouring other stores tomorrow to see if they have any left!
OH…when I was in the store, an employee, ran into my walker with her shopping cart TWICE! She was picking up clothes people put in the wrong place. She saw me, looked me in the eye, and bam! I have been hit! She said something I could not understand. The next time, same thing. I thought….I’m so glad this store will hire the mentally challenged. (Wow! a big difference from the $.02 that pissed me the other day huh?) I admit she did annoy me, but I just let it pass. The only thing that really bothered me was that she was also the lady who was in charge of the fitting room. I asked if Stuart could help me. Yes, but he had to leave his things outside. (his things were, his sweatshirt, and shopping bags – not store merchandise) He asked where, she mumbled something and pointed to a shopping cart full of stuff. Stuart said, “I wonder if I’ll see that stuff again?” We did, but we had to dig for it down in that shopping cart. How bizarre. But I really felt, mentally challenged, not just lazy like the $.02 lady…. I think that made a huge difference.
So…I’m scared, that’s normal right? I’m a bit off, somehow I have to hope they can make it better….somehow.
Going to start talking to doctors about disability, afraid about that too. If my doctors said they don’t think I’m disabled I think I’d fire them. Oh, I’d be wayyyyy too angry to speak. I know I’d have a break down right there. Yep! So I have an email to my therapist about how to talk to them about this before I actually do it. I’m way too touchy right now.
The new baby should be here no later than Thursday. (they are inducing if she doesn’t go into labor before then). I’ve barely seen the mama. She has been in the guest room with the door closed in the dark for most of the time. Chris has been around. It’s been kind of surreal. Especially with all the new stuff going on with me, and she was diagnosed with this same thing with the pregnancy, but she seems to just have the headaches. I deal with the headaches very well, I’ve been having migraines since I was 11. Poor Penelope has never been sick. This past 6 weeks has been hell on her I think. I hope things are easier after Rowen is born.
Forgive the look of the blog….I’m working on it. I’m still not there yet, but I’m playing. It’s hard to read a lot because things are blurry so forgive me if I don’t make it to your blog a lot, or if I have many misspellings. But the graphic stuff is kind of fun (if they would just tell me what size it needs to be)…I’m playing…It will turn into something we all love I hope!!
Today was a breath-taking beautiful day. The sun was shining, it was in the 80’s F….yes the 80’s on the first day of March! A good friend of mine just got married! I’m so very thrilled for her, you may remember me passing along the candle lighter award to her….Congratulations Fiona and Jeremy…I adore you!
I slept longer than I have in a long time, I woke up with a minimal headache (my normal every day type of headache). I was still seeing double but it didn’t seem to last as long. I lounged in bed for a while with the window open and enjoyed my breakfast. Then I read a bit on the computer and decided to get dressed for the day. We were refinancing out house to a better rate, and we had to sign all the papers at the lawyer’s today, so I had places to go. I decided to start getting ready very early. About 2 1/2 hours early. Just in case. I wanted to do a little then rest, do a little more, rest…eat lunch….rest….you get the idea.
You would be so proud of me…I know I was. Darn I should have gotten a picture!! I French braided my hair. I’ve never been able to do that! It has always turned out lopsided or with straggling hairs, but usually it is a “Dutch” braid. A French braid lies flat against your head the Dutch braid is kind of backward, it looks like a braid stuck to your head….it sticks out. It’s kind of neat, but not what I wanted. And…imagine this, I did it on the FIRST try!!
I tried on a few things to wear, but the one’s that I don’t look like a blimp in were too hot, I admit I was getting sad and upset. Then I thought of a white tank top with an orange cap sleeved sweater over it that has one button around the abdomen that makes me look much thinner. I actually put on makeup!! I got ready, got dressed, and got down stairs….all by myself. I was beaming with pride.
Stuart and I decided if I felt well enough after our visit to the lawyer we would have a date night and go to Fishmonger’s. I LOVE crab legs. I know he just got them for me on Valentine’s day…but it was so nice to have a date night with my hubby. In a restaurant right across the street from where we met.
Fishmonger’s is one of those little seafood restaurants that make you feel like you are on the Carolina Coast.
This is the type of tables they have there.
I am having a very hard time with my hearing. Stuart needs to step up his ASL practice. On average I have to ask someone to repeat themselves at least 3 times, and after that I just drop it. It’s too embarrassing. And it’s usually just some small talk. I can’t remember if I’ve mentioned it here, and I’m too tired to look back and finish this so I’ll give you the short version. Saw Audiologist on Monday. She thinks I’ll need a cochlear implant soon but the requirements change with insurance companies. We have new insurance starting this months. (they are going to love this) The first question Stuart is going to call and ask is what
their criteria is for covering a cochlear implant? The surgery cost between $30,000 and $100,000 and our out-of-pocket will be $150 Yay!!!
So I may have told you…forgive me.
So while we were out, it came time for my medication. All of a sudden I had a sharp pain in my head, I asked what time it was, exactly time for my medication! I asked if we happened to remember….ooops, nope. So I was 2 hours late taking it. By the time I got home, I was not able to walk unaided, I was slurring my words, I had to really concentrate to understand things…..it’s kind of funny, in a way I feel like I’ve taken some drug…like a downer or something. But it’s all being caused because I missed my medication. Ahhhh!
Right now I’m running a fever again. Every night, only at night. Strange huh? I take some Tylenol it goes away.
I still have a lot fo figure out with all of this, and it will take some time. It is apparent that I’m getting better with the side effects and I’ll probably get even better when I get some potassium (Diamox is known to deplete potassium.) I have been trying to eat a banana a day, but it’s hard when that’s the cap on the amount of fruit I can eat in one day. So we went to buy some and the store was out. How rude!
I’ve been watching these cooking shows and now I’m just dying to cook. But I need to be more steady on my feet for that. Perhaps I see some slow cooker meals in the future. (much less dangerous, I can just instruct Stuart.) I bought some herbs recently, and got a free ounce of Saffron….oh….what will I do with this delectable spice?
Also, if you have never heard of or tried Pot Herb – it is a mixture of Chives, Chervil, Parsley, Thyme, Marjoram, and Bay leaves. This was delectable in Chicken Soup..and just on chicken….I can imagine so many things to do with this blend…why have I never heard of this french blend of spices before?
So…
What a difference a day can make. Do I feel this much better from all the well wishes? The joyous feelings I have for my friend? The fact that the Topamax was uped? The beautiful weather (you know I got to take the top off!!), or have I once again, simply decided enough. I can’t stand to live with you like that! Get up! Pick yourself up…even if you need help, and find something that satisfies you. even something small…and build it up again.
That’s why I say those silly expectations I had for this life…they must be fluid now, and change as I do.
The following definitions of the different types of Bipolar Disorder is copied from the Mayo Clinic website. You can find the entire article here: http://www.mayoclinic.com/health/bipolar-disorder/DS00356 It’s a very interesting article if you want to know more about Bipolar Disorder.
“Bipolar disorder is divided into several subtypes. Each has a different pattern of symptoms. Types of bipolar disorder include:
Bipolar I disorder. Mood swings with bipolar I cause significant difficulty in your job, school or relationships. Manic episodes can be severe and dangerous.
Bipolar II disorder. Bipolar II is less severe than bipolar I. You may have an elevated mood, irritability and some changes in your functioning, but generally you can carry on with your normal daily routine. Instead of full-blown mania, you have hypomania — a less severe form of mania. In bipolar II, periods of depression typically last longer than periods of hypomania.
Cyclothymic disorder. Cyclothymic disorder, also known as cyclothymia, is a mild form of bipolar disorder. With cyclothymia, hypomania and depression can be disruptive, but the highs and lows are not as severe as they are with other types of bipolar disorder.”
There is much more to know about Bipolar Disorder, but I won’t bore you with tons of details when you can look them up. I know most of my readers like to research things. This post is more about my experiences being Bipolar.
I have Bipolar I disorder. When I would have an episode, it disrupted every part of my life. I lost jobs, relationships, once I lost the place I was living, and I almost lost my life more than once. During my episodes I would have periods of lost time. Once, I couldn’t remember almost a month of my life. Most of the episodes when I lost time were episodes of mania.
The depression episodes, sent me into the deepest darkest caverns of despair. I was convinced no one cared, and the world would be better off without me in it. I was in such agony, and couldn’t see any way out of it. I thought of suicide many times, and attempted it more than once. One time I came very close to succeeding. I was involuntarily admitted to a mental hospital for nearly 3 weeks. My best friend of 9 1/2 years and roommate decided she couldn’t take it and moved out the day I was released from the hospital. I lost my job. There were a few jobs where I lost control, was convinced my co-workers or boss were out to get me, and I walked out. With nothing to fall back on.
The mania was at times sweet. (this causes many not to stay on their medication, they miss the high of mania) I would have creative binges. I would paint for days on end, often not eating or sleeping. But it had extreme down sides. While in a manic state I didn’t think anything could hurt me. I tried drugs, I had risky sexual exploits, I spent money I didn’t have… During one manic episode I bought a Jeep, had the people at the dealership take the top down before I left the lot, and then drove to Washington, DC to meet someone I’d only talked to on the phone, or emailed. He did work for the same company I did, but in a different city. No one knew where I was going. I was lucky, when I think of what could have happened, I shudder. (BTW – it took me a long time to figure out how to put the top on my Jeep) I would get credit card bills for things I didn’t remember buying. I loved to treat people when I was manic, and I loved to buy gifts. I would meet people who knew me, but I didn’t remember them. By the time I found out I was Bipolar, I was facing bankruptcy.
At times I did what’s called rapid cycling. I’d be low one moment and high the next….over and over. It was mind boggling, and very scary for others around me. I couldn’t keep friends. Mania can turn to anger quickly. I pushed people away, sometimes during awful fights, when I’d say things I didn’t mean. I was cruel.
While depressed I was convinced things would never get better.
I was originally diagnosed with Bipolar disorder in my mid 20’s, after a suicide attempt. Then a year of two later, I was told they were wrong, all my symptoms were caused by hypoglycemia. Depression set in and I was then diagnosed with clinical depression, and put on antidepressants. These sent me into a major episode of mania. I was taken off the antidepressants and told I had anxiety disorder, with another medication change, and another attempt at suicide.
This roundabout when on for some time. One night, I cut myself numerous times trying to get up enough nerve to cut deeper. Instead I called a suicide help line, and ended up being committed to a mental hospital. This was the best thing that ever happened to me. Even though I was once again misdiagnosed while I was there, with Borderline Personality Disorder, the group sessions were very helpful and I was now in the system. This helped me find a therapist and psychiatrist who understood, and helped me.
After getting on the right medication, my life began to normalize. However, I had learned behaviors to overcome. I’d been undiagnosed for so many years, I only knew how to react to situations as I would before. I over reacted to everything. Not to the extreme I would before, but I only knew to run or fight when confronted with strong emotions. I did not know how to have healthy relationships. Finally, after many years of therapy I feel I am the person I want to be. I don’t blow up (most of the time). I have good relationships. I understand that much of what I did in the past was out of my control, but how I live my life now is my responsibility. And that’s OK with me.
I wanted to add, this is one reason having PMDD/PMS disturbs me so much. I’ve worked very hard to understand my emotions, and control them. When I have these hormonal symptoms I again feel out of control, often so quick to anger it scares me. Scares me more than I can explain. I never want to the person I was before.
As of this writing, I’ve been stable for over 15 years. (with only a few minor episodes when my medication needed adjusting.
I started this post on January 3rd. I do not hide that I’m bipolar. I’m quick to talk about it, to share my experiences so others may get help. However, this was a difficult post to write, remembering who I used to be, the people I hurt, the self-destruction… Mental illness and suicide still carry a lot of stigma. Let’s start talking about it. We need to make sure people are not afraid to seek help. We need to help everyone understand that people with mental illnesses are still people.
I’ve started a number of posts lately and haven’t finished any.
I’m having a rough time lately. I feel the darkness creeping over me, sucking the hope out of me. I’ve had this happen before, and I always pull myself out of it, but it’s hard. Right now, I just wish I wasn’t. (Don’t worry I’m not suicidal.) Sometimes, I just wish, I didn’t exist.
We watched It’s a Wonderful Life on Christmas, one of the only true traditions we have. We usually watch it on Christmas Eve, but we had a friend come over on Christmas day and we like to watch it together.
This movie usually gives me hope. It makes me believe that I could have made a difference and not known it. Just maybe I’m important in some way, that some things would be worse if I hadn’t been born. This year part of this movie hit hard. One of the last parts of this movie made me so very sad. Clarence, the angel, leaves a book for George Bailey and in it he writes, “Dear George, remember no man is a failure who has friends…..” George was surrounded by people who loved him, who he had helped in so many ways that they were all willing to help him, without even knowing what caused his troubles. (if you haven’t seen the film, George finds himself in a huge mess and considers suicide. Clarence, shows him what life would have been like if he hadn’t existed. It was a pretty grim picture. After he sees this, he wants to live, then he finds out that his friends all want to help him.)
I have been feeling I have a lack of true friends lately. Friends I can really call on. I know I have a few. However, not that many. Does that make me a failure?
I’ve had a couple of friends this year tell me I haven’t been a good friend. That I’ve ignored them and haven’t worked on our friendship. That was very hard to hear. Especially from one of them. I felt I’d been there for her over and over, we had been friends for years and years. (though not always in touch) All of a sudden, she felt she was giving all the energy in the relationship and I wasn’t giving anything. I think my illness, and my depression about it sometimes scared her. But I don’t think that was all. We are back in touch, but it’s not the same. The incident has never been mentioned. The other, I could understand how she could see things that way. But it was never intentional. And now, I feel odd about our friendship, and don’t know if it will survive.
I’m lonely, but I have a hard time being around some people. Losing my hearing is hard. Often, I’d rather be lonely alone, than in a room with people whom I feel isolated from because I can’t hear them. I do well one on one, but in groups…it’s so hard. I’m also having a rough time with envy. I want to be happy for my friends, and experience joy that they can do so many of the things I can’t. Sometimes I can do this, other times it just eats me up.
There are so many things that I’ve been having a hard time with.
I was reading back over my blog from this year, and my journal from last year, and found I’ve been on a sickness merry-go-round that goes something like this….hell – much better – hell – much better….over and over. I’ve been given hope and felt better and then had the rug pulled out from under me so many times I’m dizzy just thinking about it. (pun not really intended, perhaps I should say, dizzier?)
I keep thinking, even if this surgery ends up working, when will it stop. Will I have 2 months…4…12??? (Dr. Kaylie said to give it 3 months before we really judge it. This really takes a long time to heal.) When I had this on the other ear, I had 4 months vertigo free, then I had a spell of 11 days with a Meniere’s attack. Hearing down, tinnitus up, and vertigo on and off…for 11 Days! But caused by the other ear. Then I started in the Cerebrospinal fluid study, and things have been up and down since then. For over a year.
In the past 2 years I’ve had 9 decent months. Not a bad number, but they weren’t great of course, I’m just talking 9 months where the Meniere’s was better. 5 months where the headaches were better. And very, very few where my GI system was better. I even had a few where the pelvic and hip pain were better, but not many.
Speaking of GI issues. I’m still having diarrhea very often, and have gained so much weight. I’m not keeping much food in me, almost every time I eat I’m running to the bathroom. Yet, I’ve gone from 147 lbs in the beginning of 2010, to almost 200 lbs. now. (and most of that I gained in 2 months time, in the fall of 2010) I hate to look at myself, and the idea of people seeing me like this, or having my picture taken terrifies me. I grew up in a house where my father would often tell me I needed to lose weight, and would talk about others who were, what he considered, over weight. I knew even if he didn’t say it to my face, he would be calling me fat behind my back. (this caused a teen eating disorder) I haven’t seen him in long time, and won’t now. The idea of it, just hurts, I could not bear the thought of being told I’m fat, or knowing he would be telling others how fat I am. (BTW, this is not a man who has been in shape for as long as I can remember.)
So to sum that up, I do not have the Fructose Malabsorption under control. Elimination Diet started today!
We watched Despicable Me on Christmas Eve. One of our favorite movies. I think this was the 4th time we’ve seen it, and still laugh so hard. But it also makes me cry. This time more than usual. When he falls in love with those girls, and they become a family, it’s so touching. All I could think about was the fact that earlier this year we were making plans to become foster parents. Now we’ve given that dream up.
I’m still stuck in bed most of the time. When I get up I get the worst headaches! Also, I feel like I’m on a very rocky boat most of the time. It’s horrible. I’ve felt unsteady for a long time, but now, I walk a bit like I’m drunk. I have to walk very slowly. To top it off, I feel sea sick. Strangest thing about that – the only time I’m not feeling nauseous is when I’m eating. (is that weird or what?)
This is also a difficult time for me because my mother’s birthday was New Year’s day. It was such a special time when she was alive. No matter where I was, at some night club, or party, or what ever….as soon after midnight as I could I would call my mom and wish her a happy birthday! I remember one year I was at a bon-fire, and I had to drive about 10 miles to find a phone so I could call her. Now, most years, when midnight strikes, I’m just home. Stuart often doesn’t even make it to mid-night. He doesn’t like to be on the road on New Year’s Eve because of all the drunks. I understand, but it’s hard on me. He promised last year, this year we would do something special. We were going to check into a hotel, party in their and we wouldn’t have to drive anywhere that night. Perfect. But, as you can probably guess, we can’t do that. Plus, I’d probably be miserable because of my hearing troubles. So what to do?
I don’t like it when I get like this. (I logically know part of it is PMS, and I will pull myself out of it, but it’s a rough time.)
I’m certain I can deal with whatever the future has in store for me, but right now, I hope it doesn’t throw me another curve ball too soon. I need to catch my breath, and renew my outlook.
Now for the request.
As I’ve mentioned on here, I started a goal list for the Day Zero Project. You list 101 things to do in 1001 days. I have one thing on my list that should be easy, but it hasn’t been, and I was hoping you guys could help.
#26 on my list is to Make a list of 20 things that I like about myself and stick it to my mirror. (to be read every day)
I’d like to change that to Make a list of 20 things others like about me and stick it to my mirror.
Can you help? Can you tell me something you like about me? Not only will it help me check something off my list, I think it would help me during this dark time to hear some good things about me.
Picnic with Ants 