I just got off the phone with Dr. Gray. I told her how much better I’m feeling, and she said she didn’t want to even test my pressure if I’m feeling this good. She doesn’t want to mess around with things.
She is very hopeful that I will continue to feel better. (me too!)
I am wondering if the reason I’m feeling so much better is because I stopped taking Topamax. It can lower your pressure, so it could have been causing my pressure to be too low. Or it could also be because I started taking B12 shots. Tomorrow will be week 3, so I should really be starting to feel a difference there. I have much more energy, and I just feel better. Perhaps a combination of the two has really made the difference. I don’t know, but I’m just grateful to be feeling so very much better!
What a difference from just a couple of months ago, huh?
Oh, I am talking on the phone again! I had 3 conversations on the phone today and I was able to hear the people, and I didn’t get nauseous. (often when I tried to talk on the phone before, even when I could hear, it made me so dizzy I would get sick to my stomach)
I had such a nice day today, I just had to share it.
My hearing is better. No symptoms at all really! Yay!
Today we went to the co-op first and stocked up on groceries for the week. We came home and made burgers. We cooked them on the grill, and then we ate outside. It was about 80F! So cool.
Then we went to look at cars. For ME! Yes, we are looking at buying me a car. For years we’ve been a one car family, but one of the biggest reasons I don’t drive is because I’m afraid that I will get out and have an attack and won’t be able to get home. I would just feel so much better I knew I could call Stuart to come get me if something happens and I feel like I can’t drive.
This is the car I test drove today:
2004 Volkswagen Beetle
How cool is that? We drove it with the top off, and it was so much fun!
Not sure we’ll get this car, but it sure was fun test driving it.
Another nice thing about today…my husband has been flirting with me all day. It’s so nice. He so often has to be my caregiver, it’s so very nice for us a day where we are just a married couple, in love, and having fun together.
I’ve been feeling great lately. I still have my lumbar puncture scheduled for Wednesday, I think I’ll try to do as much as I can from now until then. That way if over doing it is what caused my last set back, it should do it again.
Tomorrow, I have another one of those Breath Tests. On Friday when I could finally eat I had such a horrible headache I was forced to bed for hours. I hope tomorrow’s experience is better.
Today I don’t have anything particular to write about.
Health wise things are about the same. I’m feeling a bit better. Hearing has improved, but still not up to its normal standards, and I’m still nursing a headache. However, the weather has been crazy here. Warm one moment, cold the next, and now it’s raining. So all in all things are pretty good there right now. Just waiting on the next visit to see Dr. Gray on the 2nd.
Every year about this time our master bathroom gets invaded with lady bugs. I’m not sure how they get in there, the window doesn’t open, I think they just came with the house. : )
Lady Bugs in my Bathroom
Yesterday I took a picture of myself. Don’t know why, I just felt kind of pretty.
That's me!
Today I had a first: I was served with a Subpoena. Of course I’ve seen people get served on TV many times, but I got mine in the mail. How weird is that? It is such a strange feeling to see on a piece of paper that I am COMMANDED to appear and testify in court the week of March 28th. I have to testify against Paul Seelig, former owner of Great Specialty Products. He was selling bread as Gluten-Free bread and it wasn’t. I was one of the people who bought some and got sick. It’s a much longer story than this, and I may tell more later, but for now you can read the initial news report about it here: http://www.wral.com/news/local/story/6949028/ if you would like.
I won’t bore you with the details of how involved I got in this case. But I feel so betrayed, and hurt. I believed this man, and he could have killed people. I got sick and convinced myself that I must have gotten gluten somewhere else. I feel like I am such a bad judge of character now.
I’d like to dedicate this post to everyone who loves me, or who simply shares their love with me.
I often mention how much my husband does for me. He not only takes care of my physically when I can’t, he does housework, and he also holds down a more than full time job. He also puts up with me when I am having a very short-tempered day because I’m not feeling well. He does all of this because he loves me. I can’t imagine how I would get through all of my trials without him. (I’m really glad I don’t have to.) Thank you husband, for being there when I’m my sickest, for listening to me when I just need to scream, for encouraging me, for being strong for me when I don’t feel very strong myself and for still flirting with me and making me feel like I’m sexy. Your love is very important to me. I hope you know how much I love you.
To my dear friends who still accept me as I have changed with this disease. I know I’m not quite the same friend you originally met, but I sure am glad you stuck by me. I love it when you share your life with me, and tell me what is going on with you and just don’t even pay attention to my illness. Those are special days to me. However, I am also grateful for the days you let me cry on your shoulder and tell you how hard things are, it’s nice to be able to talk about it and know you aren’t being judged. You have been a great friend. Thank you for loving me. I love you too.
To my wonderful blogging friends. You have listened to me possibly more than anyone. You have heard mostly my down times, and you are still here. I love you for that. You encourage me, and have helped me to come to terms with my illness. You may not know me personally, but you have shared your love with me, you have reached out over many miles and given me hope, knowledge and friendship. I thank you, and love each of you.
I would be remiss in this post if I didn’t mention the love of my pets. Our darling dog Sandy, and loving cat Max. They are always looking out for me. They know when I don’t feel good and always try to make it better. I often feel like I’m a pet pillow (at least I’m not a Pillow Pet!), but they just want to be as close to me as they can. They are always there for me. They warm my heart, I love them so and can’t imagine my life without them.
I’m a very lucky person to have so much love surrounding me. It really makes living with a chronic illness easier. At one point I thought it would be easier if I was alone, if no one cared. Then I could just drift away and it wouldn’t matter. I was in a deep depression and felt my life was over. I couldn’t see how I could possibly be of any use to the world being in the condition I was in. I’m very grateful I had some wonderful people who loved me and made me realize I had something to live for.
Still can’t hear. It’s so much worse now that the Meniere’s is in both of my ears. Since I can’t ever hear out of my right ear when my left ear is having problems I am at a major disadvantage. I’m trying very hard not go get frustrated, but I get so tired of saying, “What?” and “I’m sorry, but I can’t hear you.” I have to admit I often let my frustrations out on my husband, he will talk to me and I just yell at him that I can’t hear him. It’s not his fault, just two days ago I could hear him. I just get so frustrated. I’m trying to get better.
We went to the mall today to pick up some dog food from a non-profit store that we like to give business. This mall is a good ways away from our house, but I think it’s worth. Normally. When we got there we decided to walk around for a while and get something to drink, do some window shopping. I have a huge weakness for shoes and just had to look. We are trying not to buy anything new right now, so I was just looking, however I was being mighty tempted. I tried on a pair of shoes, really I wasn’t going to buy them, usually when I try on a pair I change my mind….and I did. However, when I went to put the shoes back I had one of those “Oh shit, the world just moved much more than I did.” moments. I immediately took some Valium and Phenergan and decided it was time to leave. I did start to feel better on the way home but was in no way stable.
After we got home I hit the couch, and I’m still here. I went to the bathroom and things went a little merry go roundish again. So, I took some more meds and just had a Phenergan suppository too. I’ve also had a horrible headache today. I took a Maxalt (a migraine abortive) a little while ago, it eased it but didn’t take it away. I’m afraid to take a pain pill, I’m afraid I’ll get dizzy since I’ve already taken 2 Valium.
I thought about taking the Diamox, the medication Dr. Gray gave me if my pressure went too high, but last time I took that it made things worse and I had horrible side effects from it. I don’t want that to happen again.
Thank you all for the encouragement. I do want to let you all know, I’m really not that stressed about this. I’m not afraid of an attack coming on. If it does it does. I am afraid I’ve gone through all of this for nothing. I am afraid I will have to suffer through the attacks and feeling awful for months before they will do anything else. I wonder sometimes if I shouldn’t have just gone ahead and gotten the surgery on my left ear like I did my right. At least it helped the vertigo. But then I think. How else would they learn if not for people like me, taking the chance to risk a different type of treatment? It may not work for me, but it has worked for others. And who knows it is still too early to tell, it may work for me too, it may just take a bit more tweaking.
On top of this I think my kidney stone my be moving. My left side is hurting, just where the doctor told me it would, and I keep feeling like I’m going to explode if I don’t pee, but when I go in there I just get a few drops. Hopefully, it will just settle back down and won’t decide to come out right now. I really don’t need to deal with that right now.
Well, I’m really tired now and think I will rest some more. Perhaps even just go to sleep.
I mainly just wanted to vent a little, and let everyone know I’m OK. Thank you all for all the well wishes.
(My thinking is a little muddled right now, so I apologize if this post isn’t up to par. Please forgive grammatical and spelling errors, or rambling.
Yesterday started off being a very good day. I woke up looked in the mirror and thought, “Hmmm, my face looks a little thinner. Nah, must be the light.” So I stepped on the scales, and I have lost some weight! I lost 5 pounds! I was so tickled.
Then I had much to do, a friend was coming over to make us dinner so I wanted to clean up the kitchen a little and run to the grocery store for a few things. Yes, I planned to drive to the store myself.
I did actually DRIVE to the store, but Stuart did go with me. He wanted to get out of the house too. I came home, cleaned the kitchen, and even did a little out in the yard. Our friend came over and made us dinner. It was very nice.
I kept noticing that I really couldn’t hear our friend very well, but I often have trouble hearing him so I wasn’t worried. He and Stuart were talking and I decided to just concentrate on something else because I couldn’t keep up with 2 people talking, it was very hard, but I wasn’t upset or anything. I was glad they were having a nice discussion.
We decided we’d watch a movie. We picked one that had subtitles and I was fine with reading the movie. I was getting tired, but not overly so. I was using my amplifier in my right ear (the ear I can’t hear anything really out of without the amplifier). After the movie I took off the amplifier and realized my hearing in my left ear had dropped significantly.
We went to bed, I thought perhaps after a good nights sleep things would be back to normal. Unfortunately, when I woke up this morning, my hearing is still down. I don’t feel bad. I’m not dizzy. I do have a slight headache…still, but I often have headaches this time of year because of the weather changes.
I won’t lie, I’m scared.
I looked back at my posts after the last spinal fluid patches and the first symptoms to come back were, headaches and hearing loss. Within 3 days after my hearing dropped last time I had a vertigo attack.
We’ll just wait and see….and call Dr. Gray on Monday and see if I can get in to get my pressure checked. I think it would be better to know what we are dealing with on that front.
I went to the library today and there were daffodils blooming in front of the building. Oh, I love the first signs of spring. On Monday it was so nice I sat outside for a while and just soaked up the sun. It was so beautiful. I know we will still have some cold days, but the warm days are peaking through, and that is making me happy. Time to start planning our garden!
I’m sorry I haven’t posted in so long. My stupid headache lasted for days. I literally slept for nearly 2 straight days trying to get rid of it. I’d wake up and would still be in so much pain, I’d just take more meds and go back to sleep. It has been much better, but I still feel like I have a nagging headache, just not one that will knock me on my butt!
On Monday, I had a good day. I actually cleaned the kitchen, and vacuumed the kitchen/breakfast nook and living room. It looks so much better. Our new vacuum is so powerful, it needs a different attachment on it for the carpet, it is so powerful the suction makes it hard to get it to move along the carpet. But, boy you really should have seen how much dirt it picked up. I never would have guessed there was that much in there. (Or maybe you shouldn’t see it…now should I be ashamed? Or delighted that I was actually able to finally get it up? I think I’ll be delighted!) And today I’m working on the laundry. I really hate doing laundry, but I’m so happy I am just able to do it.
I even made candy on Monday! I was going to take a picture, but I put it in the refrigerator, and it turned a funny color, so I didn’t think it was photo worthy. However, my husband was thrilled. I made mint chocolate Lego Blocks for him…he is a huge Lego fan, and loves mint chocolate…no silly hearts for him on Valentine’s Day. : )
We even made it out to dinner. I had planned to cook, but we hadn’t made it to the grocery store, so out to dinner it was. We got there early, so no waiting. Then we spent the evening grocery shopping. How romantic, right? We did come home and have a nice quiet evening together and it was very nice.
So, how am I doing physically?
Better. But the headaches aren’t good. However, I think they are mostly hormonal. I’ve been having a very light period, but it’s the first one I’ve had in months. Also, I’m trying to go off of birth control pills. (no I’m not trying to get pregnant, I just want my hormones to be my hormones and see where I’m at with all of that.)
I still start feeling worse in the evenings. Dr. Gray is talking about testing my pressure to see where I’m at, I think that’s probably a good idea.
I did see my regular MD this past week. (did I mention that before? I should probably re-read my last post, I was in so much pain when I wrote it I really don’t remember much about it.) Well, if I haven’t mentioned it we found out that I have a B-12 deficiency again. I was getting shots last year, then I went to oral supplements. It looks like I don’t absorb the oral supplements or B-12 in my diet very well. A lot of people with celiac disease don’t. So some of my icky feeling symptoms could very easily be caused by that. My thyroid was also a bit low, so there we go with more of the same symptoms. Fatigue, dizziness, GI symptoms… It’s hard to know what is causing what.
My nutritionist started me on a diet to help regulate my blood sugar. It is mainly just meat and veggies with very little fruit. I am to make sure I have protein and fat every 2-3 hours. I’m also to drink lots of broth. I’ve been drinking the broth for a few weeks now, and it really seems to be helping my digestion. I’ve actually had come normal bathroom habits. I still have some diarrhea, but it is less that it was, anything that isn’t diarrhea is less that it was. (I know icky subject.) If I could just start losing some of this weight I would be a very happy girl.
The last couple of nights I’ve had a hard time sleeping. I’ve read 3 books this week. One was pretty short, but still, that is just insane considering I don’t read in the day time. You can really tell when I have insomnia, I go through books like crazy! I read Counterfeit Magic by Kelly Armstong, Three Bedrooms, One Corpse by Charlaine Harris and Ghost Town by Rachel Caine. All of these books are parts of series. Sometimes it drives me crazy that I get all caught up in a series, other times I can’t wait for the next one to come out. I was disappointed in the first book. The second book is a mystery, this poor girl one of those people who always seem to have people murdered around her, but it was cute. The last book, was really good. I was impressed that this author was able to come up with such a unique story on book 9 of this series, I felt like it was getting a bit same old same old with the last book, but this one really switched it up.
Well, that’s all for today. I hope you are all getting your first days of spring and are enjoying them as much as I am!
I got my first headache since the patches yesterday. It was a pretty bad one, but when I took some meds and a short nap, it went away.
Last night when I was trying to go to sleep I was all stuffy. I think I’m having allergies. I woke up this morning around 8am with a horrible headache, I went back to sleep for a little while (read 2 hours on and off here) and when I decided I would just get up I swear my head hurt even worse.
Today it’s on the left side of my head. I feel like there has been a rod inserted in my left eye and it’s coming out the lower part of the back of my skull, and it’s rotating. At first I didn’t take anything, I thought I’d eat something and drink a bunch of water first to see if that would help. Nope. Then I took a Topamax, to see if I have high pressure. Nothing. Then I took a Maxalt (migraine reliever). Nada. Finally, I took a Hydrocodone. I can’t really open my left eye now, and I’m sick to my stomach. I just took a Phenergan to see if it will help with the nausea.
So what is causing this horrible headache? Allergies? Hormones? (I’m on my period.) or is my pressure going too high?
I just really wish it would go away! I really need to do some house work, I can’t tell you the last time my house was vacuumed….maybe Christmas? No wonder my allergies are bad. : ) I got a new vacuum for Christmas, anyone want to come try it out?
Happy as a Monkey (I did this painting for a friend's nursery.)
It’s been 12 days since the Cerebral Spinal Fluid Patches, and I am feeling better.
I still feel better in the mornings, and then fade in the afternoon. By the evening I often just feel a bit icky. Kind of off kilter. (you know, a little off-balance, not much, a little nauseous…) However, over all, I do feel much better as far as the Meniere’s is concerned. Not so much with my GI stuff, and my hip pain, but that is a story for another day.
Stuart talked to Dr. Gray a couple of days ago and he told her how I felt so much better in the mornings, then as the day goes on I start to feel worse again. She said that is a sign of low pressure. She suggested I come in and have her patch the last leak. They didn’t patch them all because they were afraid they would spike my pressure, and/or cause it to raise and stay too high. We decided to wait a few more days to see how I’m doing. I’m thinking I should probably stop taking Topamax all together (after discussing it with Dr. Gray) before I go in to have the last patch. Topamax is used to help control migraines, and it also treats bi-polar disorder, however, it can also be used to lower your spinal fluid pressure. Since I’m taking a small dose every day, I think it’d probably be a good idea to get off of it if I already have low pressure. : ) Then we will see if I still need to go in for the last patch.
How much better do I feel?
I haven’t taken any Valium or Phenergan in days.
The dizziness and feeling of being off-balance (disequilibrium) is minimized. In the mornings I don’t feel it at all.
No headaches. (well, I had a little one today, but I think it’s because I didn’t sleep well last night. No migraines though!!)
Hearing is staying pretty steady in my left ear, I can hear pretty good out of it, but some frequencies are dull. My right ear is still pretty gone, but in the evenings the tinnitus is much worse in that ear.
So what do you think? Sounding good so far?
I learned from my last experience with the blood patch that I don’t want to jump the gun and think I’m ok before I have a long while feeling that way. I’ve been conversing with another patient of Dr. Kaylie and Dr. Gray. She has high pressure (and she doesn’t have Meniere’s she has another vestibular disorder). She felt “normal” for over 2 months then the meds stopped working and her symptoms started to return. It was so hard for me after just 10 days of feeling normal to go back to having the symptoms again, I can’t imagine how she must have felt after 2 months! She is still being treated, and there is hope she will get back to that “normal” state too. Just as we are hoping I will.
This time I’m looking at things differently. Before, I looked at this as a possible cure. I don’t know if I want to think of it that way. That would mean that it couldn’t come back, and we have seen that it can. I have finally come to accept this disease as a part of me, that I have to live with for the rest of my life. I will always look for the best way to deal with it, and right now I think this treatment is it, for me. However, I know that the Meniere’s is still there. If something gets off-balance again, it will all come back. One of my lovely readers advised me to not fight it so hard, but walk with this disease and accept it. I’ve taken her advice. It will never be my friend, but it will always be a part of me, and I can deal with that (at least I’m learning to). It has made things much easier since I started thinking this way.
Another thing I’ve been thinking about a lot lately. Friends. I feel like I’ve lost touch with so many of my friends since I started getting really sick. (I say really sick, because I’ve been sick for a long time, but I was functional. This past 2 years have been much harder.) I was taking that very hard. But I really needed to look at it and realize, that most of it had nothing to do with me. Most of my friends also had children over the past 2 years. I can’t drive, and their lives are so busy with their new families they just don’t have the time to make for me. And that’s ok. I’m still here. You know, even if it is because they don’t want to be around a sick person, that’s ok too. I’m not going to take it personally.
I decided I’ve had some really great friends in my past, and I love them and want the best for them. We may not be in touch as much right now, that’s ok. We may be more in touch in the future and that would be great, if not, then it wasn’t meant to be. I will still love and cherish the time we spent together. I know there will be new people in my life, and in theirs. We grow, sometimes we grow apart, sometimes we grow together. Sometimes we simply grow up. I think I’m doing a lot of that right now. (at 47, you would think I was all grown up….but I’m learning new things all the time, especially about myself. And heck, I don’t think I’ll ever see myself as a “grown-up”. *shudder*)
I know I haven’t been posting as much as I usually do, and I haven’t been talking about my progress after my Cerebral Spinal Fluid patches, but I just haven’t felt all that different.
I wake up in the morning, and most mornings I feel pretty good. (that’s not unusual) I continue to feel a bit off balanced all the time. As the day goes on I seem to start feeling a bit worse. I don’t really know how to explain it. It’s kind of like I’ve always felt, but different. My head feels full, and I feel like if I moved my head too much I’d barf. I feel slightly nauseous most of the time. If I get hot, it gets so much worse. I’m just not sure what it all means. Stuart tells Dr. Gray and she seems content. She says it’s good that I’m not having headaches. I’m happy about that too. I sure do wish I would see more improvement.
I do feel like my hearing is a bit better in my left ear, but I still have trouble hearing certain frequencies. I don’t realize just how much I rely on closed captioning until I don’t have it.
So, my progress so far…not too much. But I haven’t had any full blown Vertigo attacks!! That says a lot. One time I felt like I might start having one, I took a pill to reduce my pressure (like Dr. Gray advised) I was still having symptoms 30 mins later, so I took another one…and shortly afterward I couldn’t stand it any longer and took a Valium and Phenergan. I started feeling better, but I’m not sure what caused it.
I had a Gastrointestinal CT scan on Thursday. It was not a fun experience, but it wasn’t the worst I’ve had. I think I had a reaction to the Contrast they had me drink before the scan. I had horrible diarrhea starting before I started the 3rd cup. (you have to drink 3 cups of this stuff, they tell you that, but they don’t tell you the cups are 20 oz.). Well, they almost had a mess to clean off of their expensive machine.
The other bad thing about the test. They were also supposed to put in an intravenous dye. I told the nurse on the phone the day before that it is very hard to find my veins. So she took me back in the very cold CT room and tried to start and IV, she looked at my arms and said, “Oh, yeah, you told me this would be a challenge.” I said, “Yeah, I don’t know why people never seem to take me seriously.” She said she did, she just forgot. She then said she could see any veins, and she couldn’t even feel anything. I said, well, it’s very cold in here, they had to use a hot pack last week to help out. Well they didn’t have that.
So after 5 times of her trying to find a vein, and each time she would say something like, “I don’t feel confident about this, but I’m going to try.” I felt that was not the thing to say to a patient. She was very concerned for my comfort, but she was not confident in her job. One time when she said that and was about to stick me (try number 4 I believe) I turned to her and said, “Honey, You need to get some confidence, you have to believe you are going to do this or you will never be able to do it. Take control, tell that vein who is boss! And just do it! Don’t worry so much about hurting me, I’ve had much worse.” She just said, “You are so funny.”
OK, well, I do believe, if you believe you are going to fail, you will fail. It was obvious she believed she was not going to be able to do this and she never did. Finally, she had to call the radiologist and tell him that she couldn’t do it, he said fine. We just wouldn’t have that part, if they needed it later, they’d try again. I said, “with someone else giving me the IV.” : )
Luckily, it doesn’t seem to be a need for them to do that part of the scan. Yay!
The results? I have a Kidney stone! Well, that was a surprise. It’s small and not in a place where it’s causing any harm right now, but still, A Kidney Stone…crap. I just wouldn’t think it possible with as much water as I drink. Oh well.
The doctor also told me that I have a fatty liver, I don’t have liver disease though because my enzymes aren’t high. So it’s just fat there because I’m over weight. I told her, “Well that doesn’t surprise me since I gained 40 pounds in about 2 months, that is one of the reasons I came to see you.” She said, “A low-fat diet….yadda, yadda….” I told her that is what I was doing before all this started…she said I still needed to do the breath test to determine if I’m lactose or fructose intolerant. And then come in for another office visit to reassess. I told her I’m working with a nutritionist. She was great! (I thought, then why didn’t you suggest it?) Can you tell, I’m not impressed by this digestive health office?
She just keeps telling me to take fiber. Well, that didn’t work. I tried.
I’m glad my nutritionist doesn’t believe in a one size fits all philosophy. She is working with me to figure out the best diet for me, and how to get me healthier. One step at a time. Already working with her, my diarrhea has gotten better. I’m still having it sometimes, but not every day! Isn’t that exciting??
I’m still hopeful that the patches will work. Again, one step at a time.
Tomorrow is my hubby’s birthday. I gave him a gift certificate for a 90 minute massage. He had it yesterday. It was so nice to be able to pamper him for a change. And I’m going to watch the Super Bowl with him. (I’m not a sports person) We’ll have fun. Gluten Free pizza. Possibly wings. Oh, and Ice Cream from a local Dairy. (I won’t be having the ice cream, I’m not eating sugar right now, but it’s a great treat for Stuart. Perhaps I’ll put a candle in it.)
Picnic with Ants 