deucykub

Thank you so much, Katherine.

Thank you, again, to everyone. Unfortunately, today is not better. I got a call this morning that there is nothing more they can do for my grandfather. They are sending him home for us to "love on him" in his final days. I'm flying to Florida tomorrow with my husband. I wrote a note to work that probably burned the bridges I had left, Ccing her boss and our Commander, telling her just how helpful she has not been through all of this and that I would be out of town. I don't even have the strength left to care. If you know of any really last minute travel tips that might help me make it to Florida in one piece, I'd so very much appreciate them. Unfortunately, I don't have time to get notes from doctors for special allowances on the plane. Sorry if this is disjointed, I could barely think clearly enough to reserve the flights. With any luck, we'll land in the right city and state. You all are so great. Thank you again.

Thank you all for being so sweet. I really need the hugs! This is indeed with a federal agency, and it all comes down to your supervisor. Mine is, I think, literally sociopathic - no empathy, manipulative, deceitful, and cruel. I guess I drew the short straw. Even though they are on the wrong side of the federal guidelines and laws on this, they are a huge agency with nearly limitless resouces in comparison to my finite, dwindling savings. They have been dragging this out for 10 months now. I'm really near my breaking point. My husband did not take this well. He told me today he sees me as more of a patient then a wife. Blind-sided twice in one day. And me without ice cream. I know I'll get through this in the end, but man, today really stinks. Thanks for listening and for caring. That's in short supply around here today.

I'm so exhausted, fighting this ongoing "reasonable accommodation" battle with work. They sent me a four page certified letter saying basically they are going to fire me in a month if I'm not back in the office. blah, blah, blah..."may warrant removal from the federal service." My husband is going to be crazy worried now. I'm the main "bread winner" while he's back in school. Work is so cold and impersonal, and their timing is great. My grandfather, a dear friend, had a heart attack in Florida, and I've been stuck here because of this !@#$ illness. All my energy is spent, and I feel so alone and helpless. Not sure why I am posting this - I guess I just need someone to understand.

Hi, Dano: My cheeks get tired when I laugh a lot, but I think that is fairly normal. I do have problems with my voice, though. I was a trained Soprano with a 3 1/2 octave range (from C below middle C to F# above high C), but in my early twenties, my voice started to weaken and crack. I went to a vocal therapist for a while, even tried 3 months of complete vocal rest (ever tried using a whiteboard to talk for 3 months? I don't recommend it! ), to no avail. I probably have about an octave and 1/2 left in me now; when I try to sing it's raspy and weak. This was and is pretty devastating for me since I was training to be a professional and had vocal coaches who wanted to take me to opera houses in Europe. I try not to think about it and moved on to a different career path where I am fairly happy, but I'll always miss singing. My voice also gets weak when I talk for an extended period, so it sounds like maybe our issues are related. All my best!

Hooray!!!!! Welcome home, Flop. It is so wonderful to hear that you are home and recovering. I will be praying for your mother's strength that it will return quickly. When someone is in the hospital, all the loved-ones run on adrenaline and then collapse after. My grandfather is in the hospital today down in Florida, and when I talk to family members, I remind them to take it easy on themselves, too. They always make themselves sick, and we end up in this weird rotation of illness. It must feel great to be back in your own environment. So... how's that romantic emergency techician? (*wink, wink, nudge, nudge*) Just kidding! Take care of yourself. It's good to have you back!

Hi, Tearose: I'm so sorry to hear you are having such a frustrating time locating a part-time position. Looking for a job is hard enough, let alone when you have personal obstacles like we do. I work for the federal government and might be able to chime in on this. As far as accommodations go, much of the federal government is very accommodating, but it can depend on your supervisor. I think if they know walking through the door that you will need accommodations, they will be more ready and willing to provide them. I'm in a bit of a battle right now with my workplace to get the accommodations I need, but I must concede they have allowed me to telework from home 3 of the 4 days that I work, which is not quite what I need but helpful. If I had a different supervisor, this would not have been an issue - so the luck of the draw can play a factor. The good part of the federal government is they are always trying to meet quotas for disabled employees, minority employees, etc. That can give you a bit of a boost in the stack of applicants! Many federal jobs are filled by those already employed by the federal government, and competitively, federal employees are placed first. I actually completed my master's degree because I wanted to work for the government, and that gave me the "in" that I needed to effectively compete against current employees. Part-time positions are probably less competitive. I'm not sure what benefits are offered to part-time employees, but you can probably learn that at Office of Personnel Management or USAJobs. I am fairly certain there is some type of vacation accrual and paid holidays. I'm not sure that they would split a full-time job into two part-time jobs, but there are part-time jobs in federal service. If you started full-time and could not work those hours, there is a possibility that they would switch you to a part-time schedule as an accommodation, but that could put you in a messy Reasonable Accommodations struggle like mine, which would be more dependent on your supervisor's mood at the time. With a part-time position, you could probably request more hours as you started to feel better, and they could allow you more time as their budget and schedule allows. With the federal government, I would recommend being open from the start about having a disability, which means the gaps in your r?sum? can be explained in a straightforward manner, such as time spent recovering from a long-term illness. Oh yes... just remembered... this is a good time to get on board, too. The government is in a crisis right now as baby-boomers are hitting retirement age. They didn't plan on how to replace emloyees as they retire and are struggling to lure new applicants. Experience coming in is HUGE since all their "experience" is walking out the door after having a nice party and eating cake, lol. In my office, there seems to be a retirement party almost every other week (and I'm missing out on all that cake...sigh). To search for part-time federal jobs, go to USAJobs and type "part-time" into the keyword field. At that same site, you can create a search-engine that emails you open positions with the criteria you choose. I have an email that comes every day that looks at all the locations my husband may be going to grad school. (Small businesses may also be a good resource. Many small businesses are looking for someone who can perform more than just their job and have good experience in what they do. Granted, they might pay a little less, but they are also more desperate for your service, giving you a little more negotiating power when you need an accommodation. A good resource for finding small businesses in your area (that contract with the federal government) is the Central Contractor Registration. All businesses are required to register with the CCR if they are performing work for the federal government. You can select "socio-economic" factors on their advanced search page, look in zip codes around you, then hit the websites of those companies that might interest you to see if they are looking for employees (or even just email your r?sum? in "cold" to introduce yourself and tell them what you can offer). A lot of these small businesses don't know how to find good people, and they might realize that they need someone just like you, prompted by an email!) The job searching process is a long and arduous one, particularly now. I absolutely believe you will find something perfect for you! It might take a little time, but it will be worth it to find a position that is the right fit for your needs. I hope this was of some help. My brain skips around a bit right now, so if I'm hard to follow or you have other questions, just let me know! Hang in there and keep your head up... you are going to find a great job! Big hugs!!!!

Oh, crum, huh? I am so, so sorry to hear that you are having such a rough day and that your SSDI was denied. I haven't gone through the process and am hoping I won't have to - it can be so frustrating and disappointing. I'm sure you know all about the appeals, and you mentioned you expected this, but still... it's just the pits when something like this happens, isn't it? It seems the chronically ill are the ones who have to fight the hardest. We'll be here for you, at your side, step by step as you go through the appeals process, which will overturn the original decision in time. For today, though, your favorite special treat, fuzzy slippers, comfy jammies, and your favorite TV show/movie are in order. Be sad today and spoil yourself big time, then fight and have hope tomorrow. I hope you are feeling better after your excursion. Here's a BIG HUG for you.

Thank you so much for updating us, Katie. It's good to hear that the surgery itself went well! I am still thinking of and praying for you, Flop! Keep your spirits up. They'll figure this all out soon, and you'll be right as rain... well rain in a POT at least BIG HUGS!!!!!!!!!!!!!!!!!!!!!!!!

LOL! Now I have the Bewitched song stuck in my head... Da dun... Daa dun... Da dun dun dun da dun... ARGH! I'll be singing that thing all day now. Feel better, Melissa. We miss you!

Oh no, no, no, no, no... I am just so sorry to hear that Melissa is back in the hospital. What a struggle she has had this year. Thank you for letting us know, Michelle. Melissa, We are thinking of and praying for you. You are such a light to everyone on these forums, and you give so much of yourself to help others. My heart just aches to hear that you are back in the hospital. I am sending warm hugs, love, and strength to endure your way and praying for your recovery and for joy through these trials. Much love, Deucykub

Hi, Katie: I'm sorry - I don't know what could be causing Flop's post-operative symptoms. Please tell her that she is in my thoughts and prayers that the doctor's will soon figure this out and help her feel better soon! Thank you for posting with Flop's status. I've been wondering how she is doing. How frustrating this must be for her. BIG HUGS!!!!!!!!!!

Hmm... I'm not sure. I've never actually had a sleep test. My doctor diagnosed me based on symptoms, which at the time were: "Hi, um, I jerk and kick in my sleep; my husband can't get any sleep due to being rudely kicked awake and has moved to the couch... I'm lonely!" hee hee hee

Taking some Immodium AD shouldn't hurt as far as I know. It seems that getting that symptom under control is important to prevent dehydration, which would be the pits for POTS!

If she's been with you through thick and thin and then suddenly responds so harshly, maybe there is something else going on that she is not telling you about her needs? Perhaps if you can speak with her and really find out why this is so important to her (beside the obvious wanting her friend at the wedding), you might be able to work out some kind of compromise where you can be there for her in some way for her special day... (phone call, video chat, attend her bachelorette party by web cam) As friends, we POTSy folk can be pretty needy. It's easy to forget that our friends have very real needs, too, but with some creativity, we can meet their needs while being sensitive to our limitations.

Thinking of you today, Megan. I hope your surgery goes well and that you are up and about soon!

I was diagnosed with RLS and PLMD like Stevie by my PCP. She put me on Requip, which is specifically for those disorders, but I really didn't like the stuff. Although, for the life of me I can't remember why. It was expensive; I remember that much! I still get the jerks once in a while. My poor husband - he's always getting kicked. The only way I can get to sleep now is if I do this little "marching in place" routine without picking my toes up off the floor for about 500 steps. It relaxes my legs, seems to burn off what must be adrenaline, and then, I can finally fall asleep. It kills me the next day, though. I'm thinking about asking my doctor for Clonazepam/Klonopin. I've read that might be of some good. So... sick... of... medication! argh!

Hi, Jacquie: To reiterate what others have said here, online classes are a great option, particularly for those who struggle with their health. I completed my master's degree through an online program. Many excellent universities now offer online options for course and degree completion. I would wager a majority of schools offer online classes now, so you don't have to complete your degree through a school that screams "ONLINE!" The flexibility of being able to complete your courses without any set days that you have to actually be somewhere was an amazing option for me. I was just too sick too often to make it into a classroom on a regular basis. Worththewords is completely right, though - it takes a lot of self discipline to complete the classes. You have to really dig into the texts because the information is not spoon-fed through regular lectures most of the time. All of my classes did meet online for chats, and the professors were really responsive to questions both during the chat and by email. They were also flexible with my health on those days (weeks) that I couldn't get something done in time because of illness. Starting out slowly is usually the way to go, though... you never realize how much work even one class takes until you are smack in the middle of trying to finish it! Good luck and take care!

Hi, Flop: I would love to see that article once you are recovered from your surgery and are feeling up to it. Not a minute before, though. Please take it easy after. The abstract is a bit misleading in the other article. It goes on to say that hyperventilation caused by deep breathing rather than rapid breathing contributes to cerebral hypoperfusion in OI. The deep breathing, as you had said, too, is a compensatory mechanism in response to low blood pressure. Here's the excerpt I found most interesting, which actually states how the hypocapnia in OI is not the result of the same breathing as anxiety (I definitely don't support that hyperventilation IS the cause of our OI and POTS!): "... However, there are some significant differences between POTS and the hyperventilation syndrome. The respiratory rate and end-tidal CO2 in POTS with the patient at rest are identical to those of control subjects. Hyperventilation that consists of an increased depth without an increased rate only occurs during orthostatic stress. Patients increase their depth of respiration after they develop a transient reduction in BP and a persistent reduction in pulse pressure. An increase in respiratory depth is a well-known mechanism that results in an increase in BP by increasing preload mechanically and by venoconstriction. Deep inspiration also activates a vasoconstrictor reflex with a spinal pathway. Finally, respiratory neurons modulate the rostral ventrolateral medulla and hence vasomotor tone. Our tentative position is that OI and anxiety-panic states share a common efferent pathway involving sympathetic activation but that they are evoked by quite different mechanisms. Evidence exists to implicate the noradrenergic system in the development of the anxiety-panic state. Even small alterations in noradrenergic function can produce significant cardiovascular, gastrointestinal, and respiratory symptoms in patients with panic disorder that are similar to symptoms experienced by patients with OI. However, the mechanisms evoking those similar symptoms appear to be quite different. OI patients hyperventilate as a compensatory response to OI. However, continued hyperventilation is counterproductive because it causes hypocapnia, which induces a reduction in cerebral perfusion, and worsens symptoms of OI. Furthermore, although a single breath will transiently increase, continued hyperventilation reduces total systemic peripheral resistance, further aggravating OI. For individuals with panic disorder, changes in respiratory rate (ie, hyperventilation) produce panic symptoms rather than being a compensatory phenomenon as seen in patients with OI..." Good luck with your surgery tomorrow. I'm sure it will be such a relief to rid yourself of those persistent sinus issues! You'll be in my thoughts and prayers. Take care! Deucykub

Hi, Dizzygirl: I'll usually get sick about once or twice a year, and once I get something it hangs on forever. But it's nothing compared to what you are describing. This may not be "just POTS." My grandmother was recurrently sick for about 2 years - infection after infection after infection. She and my grandfather recently moved in with my uncle, who is a doctor. I think he thought my grandmother was a hypochondriac until he saw her every day. He finally brought her in to have a lung lavage (I think that's what it was called), and they discovered three very nasty strains of bacteria; one was related to TB and the other two they never figured out. They hospitalized her on the spot, and she was put on these really powerful IV antibiotics for months. They weren't even available in pill form, and thank God the doctors helped her get a reduced price; they were supposed to be about $2000 a week! She is finally recovered from that, but it was a real fight. Have you had any testing like this where they tried to identify the strain of the infection? I really hope you kick these infections soon and can return to your normal health. Big hugs!!!!!!!!! Deucykub

Flop - is this article you were referring to? Hypocapnia and Cerebral Hypoperfusion in Orthostatic Intolerance I posted this a couple of days ago in the "Patronizing Cardiologist" thread because someone had mentioned the doctor said they were "just hyperventilating." Hypocapnia (low carbon dioxide) became interesting to me after an arterial blood gas that showed a state of Compensated Respiratory Alkalosis, also called Chronic Alveolar Hyperventilation, which meant that I had been in a state of hyperventilation for so long that my kidneys had compensated to balance my blood's pH. Panic hyperventilation does not last long enough for the kidneys to kick in with compensatory measures; full compensation does not occur for several days! It's also the most common finding in the critically ill. My doctor looked at the test and said, "ABG looks good." I had done my homework though and said, "But I'm in a state of compensated respiratory alkalosis. That's not normal." He said... "oh yeah, look at that." "What's causing it?" I asked. "Hmm, you're hyperventilating." Thanks, doc, you're a gem, lol. If I had been hyperventilating in a panic for that long, I would have been in a collapsed heap on the floor.

Hi, Flop: Thinking about you today and hoping your interview is a smashing success! Deucykub

This is an interesting study done on hyperventilation in OI as compared to hyperventilation in anxiety: Hypocapnia and Cerebral Hypoperfusion in Orthostatic Intolerance "... However, there are some significant differences between POTS and the hyperventilation syndrome. The respiratory rate and end-tidal CO2 in POTS with the patient at rest are identical to those of control subjects. Hyperventilation that consists of an increased depth without an increased rate only occurs during orthostatic stress. Patients increase their depth of respiration after they develop a transient reduction in BP and a persistent reduction in pulse pressure. An increase in respiratory depth is a well-known mechanism that results in an increase in BP by increasing preload mechanically and by venoconstriction. Deep inspiration also activates a vasoconstrictor reflex with a spinal pathway. Finally, respiratory neurons modulate the rostral ventrolateral medulla and hence vasomotor tone. Our tentative position is that OI and anxiety-panic states share a common efferent pathway involving sympathetic activation but that they are evoked by quite different mechanisms. Evidence exists to implicate the noradrenergic system in the development of the anxiety-panic state. Even small alterations in noradrenergic function can produce significant cardiovascular, gastrointestinal, and respiratory symptoms in patients with panic disorder that are similar to symptoms experienced by patients with OI. However, the mechanisms evoking those similar symptoms appear to be quite different. OI patients hyperventilate as a compensatory response to OI. However, continued hyperventilation is counterproductive because it causes hypocapnia, which induces a reduction in cerebral perfusion, and worsens symptoms of OI. Furthermore, although a single breath will transiently increase, continued hyperventilation reduces total systemic peripheral resistance, further aggravating OI. For individuals with panic disorder, changes in respiratory rate (ie, hyperventilation) produce panic symptoms rather than being a compensatory phenomenon as seen in patients with OI..." [emphases mine] This article just came across my path yesterday... so coincidental to see this topic pop up!

Hi, Flop: You'll be in my thoughts and prayers on Tuesday. Good luck with your surgery and take it easy on yourself after. Please let us know how you are doing once you are up to it after the surgery. Sending you lots of strength and hugs! Deucykub

Hi, Julie: No offense here either! I'm actually really glad that you brought up the subject, and we were all able to express our opinions about it. I think this line of thought is always brewing, whether in our own minds or in the minds of those around us. We hesitate to talk about it because most of us have been accused of not really being sick at one time or another - often by doctors. Discussing this gives us a good arsenal for those misdirected souls who point the finger our way and dare to tell us. My previous post was written tongue-in-cheek. I stand by everything I wrote, but to stay sane in this world, I like to keep laughing at the ludicrousness of it all. Thank you for bringing up such an important topic for all of us! Deucykub