Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!
(written April 5th)
“Wendy” just write, don’t stop, don’t edit. Post!
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.
I posted this on my other blog Wendy Cooks, but thought it important enough to post it here too.
When you have a food allergy or intolerance it is very important to know what all the ingredients are in our medications. However, it can be hard to find reliable information about the inactive ingredients. I’ve asked my pharmacist to be sure to check the ingredients, but they are busy, and I’m sure some of them don’t actually check. When I was diagnosed with Fructose Intolerance (malabsorption), I asked my pharmacist to check to ensure there were no ingredients in my medications that would make me sick. He told me that I wasn’t on any liquid medications so I didn’t have to worry. I wasn’t really happy with that answer, so I looked up the ingredients in the medications I bought that day. I soon found that one of my medications had Mannitol in it, something I should not be taking. It was easy to rectify, I just called my doctor and got a prescription for the regular tablets. However, if I had taken the pharmacist at his word I would have wondered why I was continuing to get sick. (and unfortunately, I had to pay for 2 prescriptions)
I was looking at the Health Resources listed on my library’s website, and I found this wonderful site. Pillbox, is part of the US National Library of Medicine, it gives “rapid identification, (and) reliable information” on medications. Pillbox, has two ways you can check for your drugs.
One is a Quick Search, and one is the Advanced Search. I used the Advance Search, simply because I found it first. The Quick Search has photos of the medications, it is still under development, so some medications may not have photos.
In the Advanced Search, just fill in what you know about the medication, and it will give you a list, choose your medication and it will give you all the information you need. I tried it on a few of my medications, including an over the counter allergy medication. One I put in the name, one I just put in the description, and one I just put in part of a description. For most it found the medication I was looking for, the only one it didn’t find was one that is labeled as a pharmaceutical food supplement. It gave all of the ingredients on all of the medications except the over the counter allergy medication, but they are listed on the box.
I hope this will help you and give you more peace of mind about the medications you are taking (or giving to your children).
Please let me know if you use the Pillbox site, and how well it works for you.
Feel free to comment and subscribe to my blog so you won’t miss a post.
I know I’ve been very slack at updating my blog lately. I hope you haven’t given up on me.
Remember when I posted that I had a little dizzy feeling, not much, just a little off? Well, it happened again during one of our classes. I stood up during the break and the floor moved under me, this was pretty alarming considering we were on the 6th floor. Then I realized that no one else noticed it, so that could only mean it was just me. *sigh* I was also having pain in my left ear. I saw the audiologist for a follow-up on my hearing aids, and she said my ear drum was a little red, so I could be getting an ear infection. This was on a Thursday, I had my physical scheduled for the next Tuesday so I decided to have my doctor look at it then. On Tuesday, my doctor looked and said I had one of the worst classic ear infections she has seen. I was told to not wear my hearing aid for a week or so. It was very painful, and I was off-balance for about a week, but I’m so glad it was something that could be easily fixed. And not a relapse. Whew!
I was surprised to find out that my blood work, cholesterol and all that stuff, was better this year than it was last year, and I weigh about 40 pounds more now. Go figure. It seems that elevated triglycerides can be caused by fructose intolerance. My triglycerides have been high for years…many years! They are still a little high, but much lower than they have been in a long time! Now if the weight would just start to come off. I just don’t understand why I’m not loosing weight. One step at a time I guess.
Fostering Classes have taught me so much. Not just about becoming a foster parent, but also about myself. I’ve been looking inside much more than I have in a long time. The classes have been emotionally draining, but I feel I’m much more resourceful now. I may need help, but now I feel that I’m more prepared at knowing where to get the help I will need. I also know that no matter how much I learn, I will feel a bit lost when a child actually comes into our home. Hands on is going to be much different from in a classroom.
I am so disappointed that we aren’t getting more support from our family and friends. My father has hurt me to the extent that I am at a loss for what to do. We haven’t ever been close, and I know that he is very prejudice. Not only did he say that he could not accept it if we got a child of a different race. He told me that he didn’t believe that I would be happy with this. He is completely against it. If it comes down to me choosing between my father and my child, my father will lose. (but really, he lost me a long time ago)
My sister and I were estranged for many years. This past year we started talking again. She doesn’t say much. A couple of sentences here and there, nothing of substance really. I’ve mentioned to her about us fostering in 3 separate emails, and she hasn’t acknowledged it. I’m certain she feels the same way my father does.
It’s hard feeling like I would be better off if I just didn’t have a family. Since my mother died, I haven’t felt like I had a family at all. I’ve remained in touch with my father and sister because it makes it easier if I want to see or even talk to anyone else in our family. (like aunts, uncles, cousins..) But recently, I’ve realized I haven’t had much contact with any of these people in years. So why do I continue to try? It’s so confusing.
One of the exercises in our classes we had to write down 5 things we were close to, that made us who we are. Most people included their family. I wrote: My husband, My pets, Art, Friends, and my Blog. The friends I’ve made from my blog have been more supportive of me than my family, and most of my in person friends. Thank you all.
When you are suffering for a long time and don’t know what’s wrong, when doctors look at you like it’s all in your head (and some even tell you that), when it takes years and still no one knows…it’s so nice to be diagnosed.
Some of my illnesses were diagnosed fairly quickly, and still some things are still pretty vague. (chronic hip and pelvic pain – ummm, why?)
I know it may sound weird but I was so happy when I found out that I had a wheat allergy, gluten intolerance, hypothyroidism, Meniere’s, hypoglycemia, a B12 deficiency, a Vitamin D deficiency, and finally and most recently fructose intolerance.
Each of these diagnosis took a long time to discover. Especially the wheat allergy (gluten intolerance) and Meniere’s.
For years I was sick. I saw a note in my medical records one time from a doctor that said, “This patient comes in with a laundry list of complaints….” I was shuffled from doctor to doctor. I was told I had Fibromyalgia, chronic fatigue, and IBS. I had to learn to live with it, and I did for years. I even started a local Fibromyalgia support group. (I’m so very thankful for one very special friend that came from that group. You’re great Lisa!!) But I never stopped looking for an answer, or something that could help.
Finally, I was reading about food allergies and asked my doctor to test me. Come to find out I have a wheat allergy. Thank Goodness, I found out. I stopped eating wheat immediately, and started feeling so much better within weeks. Then I read about how many people can not tolerate gluten, and the symptoms for celiac disease. A lot of these symptoms fit me, so I decided to stop eating gluten, and it was like a light switch came on in my life. I no longer felt like I had the flu all the time, or that I needed to sleep most of the time. I had a new lease on life. I’m so grateful.
I had vertigo attacks on and off for years, with a full feeling in my ear and a constant ringing, but no one could tell me why. One night after having vertigo and throwing up over 8 hours my fiance (now my husband) took me to the emergency room. The doctor there told me that he thought I may have something wrong with my ears. Perhaps the crystals that some people get, or something else that causes vertigo…he even mentioned the possibility of Meniere’s. I loved this doctor. I was so grateful that he believed that there was something wrong with me, and I wasn’t just getting food poisoning over and over. (yes, that’s what I had been told.) So I went to an ENT, and he said I have Meniere’s Disease. I was so thankful to know something. Am I happy that I have Meniere’s? NO. But I am just so thankful that I have a diagnosis.
I’m so happy to be involved in the research going on at Duke to find out if an imbalance of Cerebral Spinal Fluid (CSF) may be one of the causes for vestibular vertigo in some Meniere’s and Ramsey Hunt Syndrome patients. I was so very happy to find out that I had CSF leaks and they could patch them. My life is a new again. (no vertigo for over 2 months now!)
Most recently, after 7 months of chronic, almost daily, diarrhea; and a battery of tests, I am so thankful to find out that I have Dietary Fructose Intolerance (or Fructose Malabsorption). Yes, it makes eating much more difficult, but I’m already feeling better after just one week. What a difference knowing can make.
Am I thrilled to have so many chronic illnesses? Of course not. But I’m so thankful that I know.
I’m also thankful for all that I’ve learned from having chronic illnesses. I’ve grown so much as a person. But that story is for another day.
Thank you all for supporting me through all of time trials. Isn’t it great to know?
First I would like to thank all of my contributors to the Meniere’s Treatments Series. I hope we all learned something (I know I did). I’m also hoping that this series will help those who are going through all of this understand that they are not alone. That not all treatments work for everyone, but there are many treatments out there and hopefully one will work for them.
Thank you to all who contributed, either through a guest post, or by commenting. This could not have worked without all of you.
It’s been a while since I posted about what’s going on in my life. So, on at the risk of boring you, here it is:
The biggest thing that is consuming my mind today is the trial against Paul Seelig. The man who is accused of selling bread as gluten free when in fact is wasn’t. I have to testify against him on Thursday. This is just so hard. I don’t want to see this man again. I don’t want to relive what he put me through. I read a post on Facebook by a woman who was at the trial yesterday. They were selecting the jury. She said that he kept chuckling. What could possibly be so dang funny? She also said that many potential jurors said they couldn’t be impartial because what he did was so horrible. Hmmm, what about innocent until proven guilty. I mean I know he’s guilty because I was there, but if I wasn’t I don’t think I could say that.
Of course, that is what I said the whole time all of this was going on. People were saying they were getting sick from the gluten free bread this man was selling, heck I was sick. But there was only a few people, and I thought I was sick from Meniere’s. I felt that people were publishing things on their blogs about his selling bread as gluten free before they really had any proof. Plus, he kept telling me that he was setting up a time for me to come in to his bakery and be there when he had testing done, so I could witness it. He even applied with the Gluten Intolerance Group to have his facility certified gluten free. I kept thinking, why would he do this if his products were in fact not gluten free.
However, even if he was guilty (as I now know he is) I felt that it was irresponsible for people to be publishing this without proof. And I didn’t feel like a home gluten test was enough. After all, we wouldn’t know if it was cross contaminated or not.
But the sad fact is, I believed him. He told me that he sold to the government and to hospitals. He said he only sold to the public because he wanted people to be able to have good gluten free bread.
I look back at the emails we wrote to each other and I feel so very stupid. Why did I believe this guy? I think I just couldn’t believe that anyone would purposefully contaminate people. And how could he be so stupid that he didn’t think he would get caught? He was making people sick, did he think they wouldn’t eventually put it together? I fell so betrayed. He must really have been thrilled to have had someone who was so gullible on his side.
Ok, enough about that. I’ll let you know how it goes after I testify, and then after the trial is over.
I have some good news. I was fitted for hearing aids last week. I will be getting them on the 8th. I’m very excited. Think of all the things I’ll be able to hear, that I can’t hear now. hehehe.
The fructose intolerance diet is going well. I saw the nutritionist on the 23rd. She put me on a pretty strict fructose elimination diet for 4-6 weeks. Then after my body starts absorbing nutrition again, I can try to add in new foods and see how I do. Right now, I’m doing so much better. No GI upset. I did have a little of one thing on my NO list, and I got so bloated, and gassy. Then within an hour I had a horrible migraine. I’m really hoping that once I get this food intolerance under control I will stop having so many migraines. (one can hope right?) According to our scales, it looks like I’ve lost about 2 pounds this week. Oh, I forgot to mention, the nutritionist told me I’m not eating enough. I’ve been trying to eat more calories since I saw her, but it’s really hard for me.
I joined Spark People, an online weight loss community, so I could log everything I eat and keep up with my symptoms and my calories. If you happen to be over there, look me up, my username is ONEARTSYCHICK.
One more piece of news. Stuart and I are starting classes on April 5th, to become Foster Parents. I may need a lot of advise from you who have children. Wish us luck!
As you can probably tell, the patches are still holding, and I’m not having any vertigo, and the disequilibrium is gone. Hearing is stable.
My hip is bothering me much more. I’m sure it’s because I’ve been doing more. But it’s a real pain….literally. I’m also having more trouble with the pelvic pain, I’m sure that’s because I’ve been feeling a little more amorous lately, since the world stopped spinning. However, just because I know why these things are bothering me more doesn’t mean it should be that way. I should be able to walk and not hurt, or have sex without pain. One thing at a time. Perhaps I will get there.
What’s going on with you these days?
I know I promised Part 2 of Treatments for Meniere’s as the next post, but I got some news today that I wanted to share. It may also go along with the last post.
Today I got the results of my Breath Tests, I talked about those previous posts. They tested for digestion issues, Lactose Intolerance, and Fructose Intolerance (otherwise known as Fructose Malabsorption). I have the later.
This is going to take some getting used to. As you probably know I already have to avoid gluten, this will just add to the things I can’t eat. I knew this may be a problem, but I never knew there would be so many things I wouldn’t be able to eat. I’m shocked actually.
According to the diet my doctor gave me there are only 9 vegetables I can eat. And after doing some research on this disorder on the web, I found that one of those vegetables are not recommended. I will be calling a nutritionist tomorrow morning to get in as soon as possible to help me with this.
Not only can I not eat fruit, and many vegetables, I can’t eat any sugar at all.
I don’t know if this aggravated my Meniere’s symptoms or not, but I’m sure it effected me in more ways than I know.
Life without chocolate…*sigh*.