LindaJoy

The thing is, it really doesn't matter what I look like now, I don't think, because my marriage was pretty sour right from the get go, and I looked 20 years old, had beautiful long red hair, was in shape, etc., then. I'm not bragging, it's just that I was not an ugly step sister. Even then, my husband was not nice to me. So, I don't think looks have anything to do with the quality of my relationship. Yes, looking good could bring out his lust, but that's all it would be, temporary lust, and I want more than that. Heck, he lusts after women all the time. Marriage has to be more than that, like Kim said: if it's based on nothing but physical attraction, and we all know looks fade, no matter what, the marriage isn't going to last, or if it does, it's not going to be very satisfying. Thank you all for sharing your experiences. I'm seeing that most of you accept your situation and just make do the best you can. Others reach out to family and friends. Others try to see the best in situations. Some try to be healthier. You try all kinds of things. One of you left. I guess, all in all, it all comes down to what is best for ourselves, and only we, ourselves, will know what that is. I have this dream that I suddenly get healthier, and I move away to somewhere very warm all year around (Northwest Ohio is cold from October through April), by myself, and start over. I get a part time job writing for a local paper, and spend my mornings on my little balcony outside of my third story apartment, reading the paper and saying hello to my neighbors. Yes, I have a vivid imagination, hence, I'm a writer by trade. But, most importantly in my dream, I am happy. I wake up every day feeling good that I am alive and excited about what the day will bring. I am not lonely. Life is good. I, like so many here, am glad you all are here. I'm sorry we all share such a terrible condition, but I thank the site owners that they provide us a place to come together to talk. I would be so much lonelier without all of you. Yes, Kim, I love you all, too. I don't know what I'm going to do. My husband and I have been talking. Well, I've been doing all the talking, he's been doing all the defending. I feel stronger all the time. Maybe it's the Clonidine, maybe it's the knowing I'm not alone with all of you here. I know I can't do anything right now with my husband ill himself. No matter how he's been, I can't leave him alone right now. I'm just not made that way. Anyway, thank you all again. I agree that personal relationships are so hard when you're chronically ill, and a separate area to discuss relationships for us would be nice to have. Take care, everyone. Hugs, Lindajoy

Hi, Shan1212, I'm glad to meet you here. Sorry you have to be, but glad you found this site. You're right in that, if you have POTS, it's a great resource for you, and great support. Congratulations on your new child. Even in the midst of illness, children are a joy. I'm so sorry you feel so lousy. It's good that you seem to have doctors who are taking you seriously and are on top of things. So many who have what we do find it hard to find docs who even believe their symptoms, let alone want to do anything to help, or know what to do to help. Again, welcome, and I'm sorry you have to be here, but glad that you found the site. Take care, Lindajoy

"There is no certain way it has to be done"??? Well, only the right way, I guess. I've had tilts done at several different institutions over the years. I've only failed one. Some of them were jokes how they did them. Yes, there are ways to do tilts that are the "right way," and there are ways that are not right and can give mixed results. Just my two cents, but brain fog is a major symptom for me. I feel drunk sometimes, and yes, very dizzy. I don't know about the eye thing, but Issie gave a site that addresses that. I know it's a bother, but going a bit of a distance to get diagnosed correctly seems like what you may have to do. I'm so sorry you had to experience this. Have you talked with the doctor yet? A long shot, but maybe he will come back with something different from what you're being told so far. If not, then yes, you'll need to go elsewhere. I've passed every tilt I've ever had done, like I said, except one, and I'm currently wearing a Clonidine patch to try and regulate my nervous systems because they don't work together very well. I have Dysautonomia, and I pass tilts. Don't think that a passed tilt doesn't mean you're okay, hon. You obviously have things going on. Sometimes, we have to look a bit to find the answers. Don't get discouraged. Just move forward. Let us know how it goes. Lindajoy

Hey, Jen. I tried your email address a few days ago. Did you get my email? Thanks. Lindajoy

Jen, I am in tears over your experience. I am so sorry. I have to agree with you. My husband acted this way once, when I was first getting sick. I took two hours to get ready one time to go out to a restaurant. He couldn't stop following me around the house, like a dog in heat. It made me sick. I thought, "You're supposed to love me and want to be with me, regardless of how I look, not just when I look like a model." If this is the only time a man wants to be with his wife, when she's looking like a super model, I'm sorry, I think that's pretty shallow, and selfish, and mean, especially when that woman is sick. I have an ex brother in law whose young wife has Parkinson's. She got it in her late 30's. She is now in a wheelchair and can't feed herself most of the time. She's very bloated from meds. Her husband is middle-aged, has a doctorate and is good looking and successful. He also wheels her where she needs to go, feeds her (even in public), talks with her, holds her hand, etc. He's the husband I would like to have. He's the type of husband we all deserve. Sandyshell, I hear what you're saying. I went to a lawyer two years ago, to see if I could leave my husband and still survive financially. She said no, that I would be totall destitute within two years, so I'm better off just sucking it up. So, that's what I've done, and it ain't been fun, let me tell you. I have so much respect for you, for not allowing someone to treat you like crap and for moving on. I want so much to be you!! I have respect for all of you who stay, too. It's hard. The whole thing is hard. It shouldn't be this way, but it is. Lindajoy

Let us know here what happens. I hope your visit goes well and you come out with some answers. Lindajoy

Hi, everyone, again. Thank you all so much for your continued emails and postings here. Jen, I sent you an email just to make sure I had the address right. I hope we can continue to talk. Thank you for sharing your story. I am so sorry you're having to go through all that again. My first husband was extremely abusive. Think "Burning Bed." When I divorced him, after two restraining orders and lots of therapy (six years worth), I was finally at a place where I felt healthy enough to be in a relationship again. I, like you, married for the second time, thinking this person would be different. He seemed so gentle, so nice, so caring. I had no idea. Anoj, Yes, after I gave up trying, I felt a weight lift off of my shoulders. But, then, the intense loneliness settled in because it was like, "Okay, fine, but now what?" And, I can also relate to your saying that you think the stress from your already not so good relationship added to your illness, or maybe even caused it. I was healthy before I married my husband. I could feel myself getting sicker and sicker as the fights continued. I don't think the stress from a bad marriage caused my illness, but I think it's one of those cases of, I had the illness in there, and stress triggered it, like having the gene for lupus and a stressful event causing the illness to come out. I had a doctor once tell me that my emotional health and physical health were absolutely dependent upon one another. Most people's are, but with me, if I'm unhappy, I'm physically unhealthy. RichGotsPots, I think I try more these days to talk about "normal" things, things I used to be able to eat, things I used to do, but not in that way, of course, just matter of factly, when I talk with people, so I don't talk illness all the time. I've seen a change in my family and friends through this, but not my husband. I think too much negative has happened. Honestly, I think our bad relationship has caused him to become sicker than he normally would have, as well. Oh, and Jen, I can relate to the "looks" changing, too. When I first got sick, I had red hair down to the middle of my back, I worked out, so I was in pretty good shape, I looked really nice. Well, I was 40 and people thought I was 20. They thought I was my husband's daughter. Now, It's just 7 years later, and people think I'm my husband's mother. They think I'm in my 60's. I have very short gray hair, my face is all bloated and broken out due to steroids, I weigh a lot more than I ever did, I can't wear any makeup. I am not attractive at all. My husband agrees that I'm fat. He doesn't tell me I'm ugly on the outside (Just on the inside), but he shows me by staring at every other woman out there. I feel like a blah, both physically and emotionally. I agree that this is not helpful to getting well. I'm so sorry all of you feel this way, too. It hurts so much. I don't wish this feeling on anyone. But, I'm grateful that you're here, sharing. I'm so glad for this forum. I don't feel so lonely with all of you here. Lindajoy (Joy, by the way, is my middle name, but my mom calls me Lindajoy, so I use it)

Just wanted to thank those of you who have written me off forum to share your experiences and offer suggestions. I appreciate your trust in me to share such personal issues, and I appreciate your taking the time to care and make suggestions to help me. I hope I can return the favor some day! Lindajoy

That's awesome, Potluck. Good luck to you as you continue improving and in your work! Lindajoy

Hi. I've been a patient at CCF since 1995. My experience has been, that if you're seeing one doctor and they think you need to be seen by another in another specialty that they offer at CCF, they'll refer you. If you are from out of town, or out of state, they'll try to get you in at least by the following day. For instance, a couple of months ago, I saw a doctor in vascular surgery for my blue hands and feet. He did some testing, found it wasn't from a clot, and wanted me to do a follow up with a colleague there in vascular medicine. Maybe I had a disease causing my issues, he thought, so he called the vascular medicine department and got me an appointment with the head of the department within the hour! I had to stay overnight to complete the testing the vascular medicine doctor wanted done, but that was okay. They have a nice guest house hotel on the grounds that you can usually get into for a pretty decent rate. Plus, staying saved me another trip, which I appreciated since I do not travel well at all. I hope you have the same experience, as far as being able to get into doctor referrals right away. They're starting this program there whereby, even if you call for an appointment as a new patient, they offer appts. for that same day or the next, even to new patients. Problem with these is, they're usually with Fellows, not Attendings. Still, it gets your foot in the door to become a patient at CCF in a timely manner. And, if the fellow sees something wrong, they are closely monitored by their attending, so you should still get the benefit of an attending doctor's knowledge and experience. Hope this helps. Lindajoy

Hi, everyone. Maybe this should go under the chit chat forum, but I think, since I'm talking about loneliness due to having illness--Dysautonomia--I'll try it here. If wrongly placed, please move. Thanks. I know we've talked here before about being in a bad relationship and having to stay due to being too ill to live on one's own, or needing our spouses' insurance, etc. What I'm wondering about here is not who stays and doesn't want to, or why, but how do you cope when you have to stay in a poor relationship due to illness? How do you tolerate someone who basically treats you like you don't matter, like you aren't even there most of the time--especially, what do you do when that person is the main person you see every day? I'm sick every day, but I'm still a person who needs to connect with others. I'm still a person who wants to be with someone who wants to be with me. I still want to feel like I'm alive with someone. I guess I can't really blame my illnesses on my poor relationship. My husband and I had been married for 3 years before I was diagnosed with Dysautonomia, and he treated me poorly even then, but as I've become more and more ill, am hospitalized more and more, I've become less and less of a person to him. I'm very lonely, yet stuck. What do you all do who are in the same situation? I have friends I talk with, and family, but I want that special connection with someone. It's been ten years of loneliness and I just don't see anything changing with my husband. I'm ill, but my mind still works. I'm still a person. I still want to feel loved, feel like I'm special, important. How do you all handle this? I've joined Facebook to be able to talk with my friends and family more. I'm trying to get out to talk with my close neighbors more. I'm calling my children and family members more. I still can't get out to see them, but I'm doing more on the phone and computer to connect with them. Yet, it's still so lonely in this house with a man who doesn't care that I'm so lonely and miserable. He doesn't even try anymore. How do you all handle this, who are in this same situation? I'm sorry to talk about something so private. It's just, I know you all are so good to talk with here. I really could use some suggestions. Thanks. Lindajoy

Hey, Rubytuesday, the reaction to the cold is something I'm very familiar with. I've had that since I was little, over 40 years. I get red, itchy, swollen, achy, anxious, you name it, in the cold. Can't handle it at all. But, this sun thing is new to me. I used to worship the sun (not good, I know), but no more. Lindajoy

I'm a writer (my degree is actually in English Literature / writing), and before I got sick, I was the editor of a small town magazine for seniors and wrote for several local magazines and our town's newspaper. I worked 60+ hours a week and loved it. I also had the energy to do it. I miss those days. Anyway, since I got sick in 2006, I haven't done much of anything but be sick. Lately, I've dug out some children's picture books I'd written years ago, and just stuffed away, and actually sent a letter to a literary agent yesterday to see if she would represent me in trying to get my stories published. I know it's a long shot, but it's something that, if it works out, I can do at home, or even when I'm in the hospital, as long as I have my laptop and can type. Well, it helps to be able to think, too, and some days, that's impossible with how bad my brain fog can get. Other than this new venture I'm trying, just dusting my house once a week, doing laundry a few times a week, or shopping once every couple of weeks are all I can really handle. Puppylove, could you explain about those cards? What exactly do you have to do? I would love to be able to help with the bills by bringing in even just a bit of money each month. I haven't worked in years. Take care. Lindajoy

My mom "blew up" when she was younger and was out in the sun one day. She swelled, got very red and rashy. Her doctor told her she was allergic to the sun. To this day, she can't be in the sun for long without turning red and having problems. I was never this way until last year. I got my first case of sun poisoning, like what you were talking about, Issie. I didn't know what it was and got frantic. Now, I have trouble being in the sun for long. I get red, itchy, blotchy, and then I'll break out in little blisters. I don't know why I've gone into this reaction, but I have. I guess just part of this "thing" I have going on. Sue, I would definitely follow up on that porphyria stuff. I've been tested for it several times, negative all times, and I've never failed a "poor man's urine test" for it. My urine just sits there, not turning anything. That's good. But, with your tests showing change to a tea color, that's definitely something to pursue. This last time I was tested, it was just a few weeks ago, and so I talked with others on a Yahoo porphyria support group who have it, and a lot of the symptoms we all have with mast cell problems can also be caused by porphyria, so yes, definitely worth pursuing. And, since it's so tricky to diagnose, you may want to see if you have a porphyria expert near you, or at the very least, one you can email who will work with you and / or your doctor. Take care, everyone. Lindajoy

Hey, all, Lyn said it when she said the aspirin blocks prostaglandins. It's one of the things mast cells dump if you have a mast cell activation problem. Histamine isn't the only thing people with MCAD have a problem with. Prostaglandins can cause terrible symptoms, as well, and aspirin blocks these. My prostaglandins went pretty high after my induced episode at OSU. This is one reason the mast cell doctor who was overseeing the testing thought I may have a mast cell activation problem. Christy, I'm so glad Dr. Afrin is helping your son. I know there's going to be a lot of trial and error, and he's not going to feel well for a long time, while you find the right regiment of meds, but getting a diagnosis is the first step, and thank goodness for that first step! Hang in there and blessings to you and your son. Lindajoy

I am so proud of you for continuing to stand up for yourself and not cave. I have caved many times under this kind of pressure and have had to suffer the consequences. Most times, now, I don't cave since I've learned that the docs don't suffer, no one else suffers but me. You go! And, take care. Lindajoy

I'm with the others who said you need to get another opinion and stand up for you! Right now, while you're feeling better, is the time to find someone who will take you seriously and provide a plan for if / when you have another flare. I know I'm this way: when I'm feeling better, I don't want to even think about medical people let alone seek them out. I see them enough when I'm sick, but it's important that you find someone to help you. With a herniated disc, etc., you're not talking something that's going to go away on its own. My husband has this and experiences flare ups a lot, and he's had two epiderals and physical therapy. There has got to be a doctor in your area willing to look at your tests that show these problems and work with you on a plan. If you have a pcp who you don't feel will help you, maybe you need a different pcp? I hope I don't come across as pushy. I don't mean to be. I just get so angry when people with health conditions are treated so dismissively. Been there done that myself for years, and am experiencing it now with my husband who has been in the hospital since Sunday. Take care, NDarlene, and let us know what you find out. Lindajoy

I get this way with elevators when my dysautonomia is flaring. Not so much with stretching and yawning. Lindajoy

I take Singulair, and it helps with my itching. It blocks leucotrienes (spelling?), just another chemical that may be involved in mast cell disease. Not only is histamine released when a mast cell dumps, but also prostaglandins, leukotrienes and other chemicals. These can be blocked with different meds from different classes. For example, a mast cell patient may be on aspirin, singulair, claritin and pepcid. Aspirin blocks prostaglandin, singulair blocks leukotrienes, claritin blocks histamine (H1 inhibitor) and Pepcid blocks mast cell release in the gut (H2 inhibitor). Hope this helps. Lindajoy

Hi, Kim. I don't know. I just know that the doctor said, "You have a spot on your brain, right frontal lobe, above the eyebrow. It doesn't take up contrast. It's not a tumor. It looks like a scar. Have you had an old head injury?" No. "Well, it could be caused by your hemochromotosis (iron overload disease), but I'm not sure." I called a brain surgeon I've seen in the past at Cleveland Clinic, and his secretary said to send my husband's MRI to them and the surgeon would look it over to make sure the spot is benign. It will just be awhile before we hear anything, and we're both concerned. Thanks again. Lindajoy

Thank you, Steph. I appreciate it. Lindajoy

Hi. The spot is in the frontal lobe, above the right eyebrow. He is not normally hypertensive, no. And, he was hypertensive before he went in. That's one of the reasons we took him. Honestly, I'm not assuming the worst. I just don't know what to think since the doc hasn't said anything. John went in with severe diarrhea, yet, the doc just acknowledged it yesterday but won't treat it until he's tested for C-dif three times. The first two showed negative, yet he won't treat until the third is done. Just wanted to know if anyone had ever heard a doctor talk about scars on the brain. Never heard of this and don't want to miss something. Lindajoy

Hi, everyone. This is a question for my husband. He's in the hospital right now. Don't know what's causing his symptoms yet. He's having severe diarrhea, high blood pressure and pressure in his head, plus tinnitus. He had an MRI two days ago. It showed a spot, so he went back in for a second MRI so they could use contrast. It still showed a spot. Now, the neurologist came in and said that the spot did not take up contrast, so he thinks it's a scar. Firstly, why does it matter if it takes up contrast or not? I'm assuming that only bad things, like tumors, take up contrast? So, if it doesn't, that means the spot is made of regular tissue. Is that right? Also, has anyone ever heard of having a scar on the brain and having it show up on an MRI? We live in a very small town, and most people take their care elsewhere. I do. My husband has never had to be hospitalized, and so far, he's not real impressed, but I'm really concerned about this MRI. Thanks, everyone. Lindajoy

I flush all the time with whatever is causing my flushing--yet to be diagnosed, either mast cell or neuroendocrine--and I also have hot flushes from being close to menopause. To me, they feel very different. With my menopausal hot flashes, it suddenly feels like someone cranked the heat up to 95 degrees. I get hot all over and may sweat. I want to strip down to tank tops and shorts. I fan myself. I may turn red, I may not. Then, within a few minutes, it passes. With flushing, I can feel my face and upper back turning red with heat. I do not sweat. My chest and neck will turn red, too, but I usually don't have any sensation. It doesn't feel like someone turned up the heat. It simply feels like my skin is changing somehow and becoming hot and red for some reason. It can get pretty uncomfortable, almost, at times, like I'm sunburned. I do not feel this way with hot flashes. It's all about the skin, with flushing. My skin feels different somehow. With hot flashes, I just feel hot all over, not like it's coming from the skin, but like I stepped into a hot sun room. Does this make sense. They are two very different things for me. And, the flushing lasts longer. I may be red and feel the heat in my face and upper back for hours. Hot flashes are just that--quick flashes. Hope this helps. Lindajoy

Thank you, Issie. Yes, Kounis Syndrome. I was evaluated for it, well, sort of, in January. That's when they did the testing at OSU for mast cell disease and some of my markers came back questionable. At the time, I was having heart pain, and the folks at TMS support site told me to be careful and mentioned Kounis. I talked with my heart doctor about it, and he became concerned enough to send me to OSU. They said my heart was fine, but they ran the mast cell testing after an episode. I have a friend at the mast cell site--she's the president of the mastocytosis foundation--who recently had a heart issue due to mast cells in her heart. Yes, it's frightening, but I think it's not very common. I won't use the word "rare." I'm finding that "rare" causes a lot of frustration and confusion, and simply isn't true in most cases! Take care, all. Lindajoy