faithinspires

My daughter and I, who share this condition, both have these troubles with our veins. I don't know if its related to the condition. But one thing I noticed they do with my daughter is use a smaller needle, and the put a warm pack on her vein which makes it surfaces...making insertion go more smoothly.

I share in your frustration! God bless your wife and those of you who have a supportive family! I struggle so hard to accept this disability...I feel much of what you feel. As for my husband, he left when my oldest daughter and I got sick. There were of course other problems that lead to the divorce including this...but I have had to endure comments from him, such as, I think about us getting back together...but I don't want to be with someone who is disabled and can't work. This adds insult to injury and makes my disability harder for me to accept. We were married with 3 children for 13 years, together for 20. I worked outside the home for the first few years, then we decided I shoud stay home with the kids. During those years I did everything from babysitting, to crafting, to selling antiques on Ebay, and working on occasion at my mom's store to supplement our income. I am frustrated that the way this illness affects my life, has affected my children, 9 & 12. Bless their hearts, they have been my only support. They have been wonderfully supportive, encouring, and understanding. They help with the things I can no longer lift. They have had to adjust to a different lifestyle to accomodate my illness. I make sure to meet all of their needs in each and every way, as always. But I hate it that they have to watch me struggle. I hate it when we can't do things we want because I am ill. We have come up with alternate things to do, but it just breaks my heart that our life isn't what it used to be before I got sick. I hate that I used to be a super high energy person, always on the go, never sitting down, going above and beyond with everything. And now I am sick and tired. I hate that at a time when my husband left and I needed to become the support for the family, and planned to that I became disabled instead. I still refuse to accept this and pray for my condition to improve enough for me to work and for me to improve our circumstances. My mind still sees myself as high energy, but my body doesn't want to cooperate. Though our stories are slightly different the frustration of becoming sick and how it affects us and those close to us is hard to accept. Spouses should care for one another if one becomes sick...in sickness and health. I for one would definately have cared for mine, or gone to work if he couldn't work. So although I know your frustration, be grateful that you are loved...be grateful you are blessed with a loving wife. I know that I am grateful to my children, but frustrated that this is what our life has become. I too remind myself that I did not ask for this, and it is beyond my control. My comfort comes in knowing that I do meet all of my children's needs sick or not. My comfort comes in that over this past year, there have been several times that complete strangers have been kind enough to care, and help my family. My comfort comes in that I had a dozen biopsies from 3 different surgeries in the past year for different health problems and they all came back benign. My comfort comes in that I have has some near death experiences in the past year and survived My comfort comes in looking for, finding, and seeing the ways in which I am blessed despite this illness. My comfort comes in knowing that I have a better perspective now on what is truly important in life and what is not. It's hard I know...there are many out there with worse things wrong...facing death...I am grateful for this perspective. But despite this perspective still struggling with acceptance of this illness and my circumstances. I am tired of the trial and error and being a guinea pig...but still I am determined to do all I can, try all I can...so that I may improve enough to improve my level of functioning. The way you feel is so normal. More perspective, My daughter who is 18, and suffers from this condition went from being an honor student, playing several instrument, band choir, symphony, gymnastics, soccer...attending school to being bedridden for a time with many hospital stays. She is now still homeschooling, still undergoing treatment, and beginning to show improvement. She returned to playing soccer this past summer, to working part-time, and to dancing with a dance academy. She too, struggled with how much the illness changed her life. She still struggles with the frustration of it as we do. She now celebrates each improvement and each additional thing she becomes able to do as a victory. Well I have rambled enough about the frustration of this disease. Take care and know that you are not alone in how you feel!

Thanks for the info!!! I really appreciate all the replies!!! Bamagirl <{POST_SNAPBACK}> I was approved for SSI this year and scheduled for review next year. I too worry about this, as it was difficult to get approved. Also, my health is still not under control enough to work. I just pray that if I am still not physically well enough to work that I am reapproved. I also hope that the reapproval process is not too stressful. I don't know this is something that bothers me...it is hard enough to be stuck in a position of being too sick to work, and then to have to go through this disability process. I also find disability frustrating as it is hard to live on. I am a single mother with two children still at home, so its been hard to make ends meet. I keep thinking that they need to get my health under control, so that I can work so we have enough to live...but each time I think it is just around the bend...I get sicker. It is frustrating and I begin to lose hope. Sorry for that little vent...anyway I second your question...what is the review process like?

I have nausea alot...especially first several hours of the day. I think the cause varies from being symptomatic to side effect of medication. For the first part of the day when I am too sick to eat, I drink Nouriche yougurt, or eat a yougurt or a pudding. I hope you figure out a reason and your nausea goes away! (I know I am not pregnant either as I had a hysterectomy earlier this year) I have been on Protonix for the stomach problems I do have, and didnt have nausea until I started on meds for this condition. But then again the condition itself has gotten worse since then...so I don't know what to make of it.

Nina, I definately can understand and relate to your frustration with the blood work. My doctor has been doing blood work for a multitude of things. For awhile i was havin it drawn a couple times a week. They draw it everytime I go in. The last time he thought that maybe i had some other illness that would explain this illness and if that is what i had he said it would be treatable with injections. But nope negative. Most are always negative. Then there was the blood draw in the ER, they said something was elevated indicating that i had a pulmonary embolism, but then they did a scan and no embolism. God was with me for that one. The doctor was dumbfounded that one test could be positive and the other negative. Of course I told him what was wrong with me when i was brought in with severe tachycardia and a seizure, but he looked at me like i knew nothing. In the end I was right...I had severe tachycardia and a seizure due to an adverse reaction from a medication. Anyway, I have been through that situation many times...hoping for answers and something more treatable...but negative. And then I get to a point I am just plain tired of the bloodwork.

I have this too, the numbers are frustrating and at times seem to make no sense. I figure if I feel bad but the readings are ok, that i must be symptomatic from being off earlier. My doctor tells me that I should ignore the numbers, be in tune to my symptoms and adjust my meds, activities etc. accordingly.

I am new, but read your post. Congratulations on achieving even beyond what you set out to do! That is great that you did so well!!!!

Morgan, Melissa, Ernie, MightyMouse, Patti, Poohbear Thank you all for your replies! I have already found this site to be very informative and uplifting! It is so great to converse with others who know the battles of this condition!

Morgan, Sorry to hear all of the problems you are having with the condition. I can relate. Was on Toprol, dropped my heart rate to 40 at all times, left me bed-ridden...so stopped that one. Spent 9 months on the atenolol, but my blood pressure continued to drop and my heart rate increase by 30 everytime I stood, I also had worsening of anxiety depression after awhile on this med. (possibly due to my heart racing all of the time.) So they switched me now to adenolol. I instantly noticed my anxiety depression were gone. Bp Hr are somewhat better, but the nadolol making me tired is an understatement. It has further reduced my already reduced level of functioning. I do like that the anxiety and depression stopped and that my heart doesnt race all of the time. I don't want to go back on atenolol. However, the nadolol is definately worsening my asthma symptoms. I hope we both find better control of our symptoms. Take Care! Like Poohbear my body has rejected many medications...I have had sensitivities to over a dozen now...an antibitotic, beta blockers, and ssri's. I am not on valium, but taking clonazepam. This helps while its in my system, but as soon as it wears off, I have tachycardia. I wonder if the valium, or ativan would work better for me sometimes...I wonder if the clonazepam is making things worse or helping...it's all so confusing.

Poohbear I absolutely love this poem it is awesome, it is great! I had to share it with my daughter who shares this condition, and with my 2 other children who have witnessed this condition. We have been extreme Dr. Suess fans here for years. We have many of his books, including this thick one with several stories and the history behind them. It was also funny to me because with my 2 younger children, as they have witnessed me faint, witnessed me with low blood pressure, witnessed me in tears after surgery...I would always look at them and say, "I do not like green eggs and ham...I do not like them Sam I am"...referring to whatever symptom I was dealing with at the time along with a pout. I also love your sign off and username. My daughter who has this condition has been hospitalized, had surgeries and been ill many times. She is usually has a very bubbly, happy, bouncy personality...so each time she is is sick I give her the pout and say Oh no, Tigger lost her bounce. I have bought her a Tigger for each hospital stay, surgery etc. She has a whole collection of Tiggers, the clothes, the watch etc. I joke with her ok no more gettin sick I am runnin out of Tiggers! Take Care! The poem is great...we all loved it!

My symptoms seem to be constant. Worse early in the day, better in the second half, also during the night. I have my blood pressure drop and my heart rate increase everytime I stand. My daughter with this condition who is on different meds tends to have her symptoms come and go. She will have a good week, overdo it and then struggle for a bit. She wasn't doing that well at first, for a time she was pretty much bed ridden, but she has improved tremendously over time.

I can relate to you all regarding the showering. I used to take 2 a day in the summer before I got sick, always did my hair, my makeup etc. Now although I try there are some days i feel too sick to waste an ounce of the energy i do have on the shower. Many times I opt for a bath instead. I don't have a shower chair but I definately would like to get one. As for the hair and the makeup...if i am going somewhere real important and feel up to it I bother. Most days now its no makeup and a ponytail. After my 3 surgeries this year this was even more infrequent, and then i just wore a baseball hat or a scarf on my head. I have a whole collection of hats and pretty scarfs for my head when i dont feel like doing my hair. This works out great in the winter, when I am freezing from low tolerance to cold and the midodrine chills. Anyways, I sooo can relate!

Chad, Congratulations on the signing with Columbia Records! I have heard many good things about Dr. Low. Your news is very encouraging! I look forward to your post about the study! Thanks for pursuing this and promoting awareness of our illness!

Hi Jaime, I understand and have sympathy for your circumstaces. I have had 3 surgeries in the past year on top of being sick. (will the migraine place make an exception if you talk to them, since you are injured and need surgery?...I can't imagine having an injury or a surgery like that without pain management) You have alot on your plate. I have been faced with other stressful circumstances since being sick...sometimes you wonder how fair it can be to have to go through these things and be sick on top of it. It would be nice for them all to be sympathetic to your circumstances. Anyways, I understand how you must feel. You are in my thoughts and prayers!

Hi Pam, Its good to meet you! I just read your reply regarding exercises. Those are good suggestions. My daughter with this condition dances for exercise. Take Care!

Hi Becca, I agree with Kristen about the website having good information on exercises (there is a page on there with Yaz exercises), I successfully tried them today. They also say swimming is good. Since I have been sick, I have made my form of exercise be walking, when I feel up to it. My doctor tells me leg exercises are the best. Prior to getting sick I had been using a Nordic Track Elliptical. I tried it today for the first time since getting sick, it was difficult but I managed to get through it. Two features of it that I like is that I can hold on, and secondly it monitors my heart rate while I am doing it. I did not use the arm feature and move my arms while doing it though, I just hung on to the bar that reads your heart rate. I look forward to hearing what suggestions other people have. Take Care!

Hi Kristen, Thank you for your response. I am glad to be here with others who understand what it is like to live with this condition. I look forward to the insight and support. My daughter with this condition is 18. I am 35. I also have a 12 year daughter and a nine year old son. We are from Wisconsin. (As I read your response I noticed I forgot to list Nasonex...lol...too many meds and conditions to remember).

I have neurocardiogenic syncope, postural orthostatic tachycardia syndrome, asthma, chronic bronchitis/sinusitis, esophagitis, severe gastritis, hiatal hernia, diverticulosis, irritable bowel syndrome, PTSD, anxiety/depression. I had a positive tilt table test. I am on SSI. (my daughter has ncs & pots too) My current medications (these change frequently, as I have had chemical sensitivities to more than a dozen now): Nadolol, Midodrine, Advair, Albuterol, Nasonex, Protonix, Tetracycline, Lexapro, Clonazepam. As I read your posts, I can soo relate to all of you! I was sick like most for a long time before a diagnosis was made. I continue to be a guinea pig for treatment, still to find the right combination of meds to improve my level of functioning and quality of life. I look forward to being a part of this group!