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katsusu

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  1. You are an inspiration. I know what you mean by having a safe place to get rid of the garbage. I actually wrote for n article for the Newsletter. I do believe that you have to let yourself be weak to be strong. I actually look at that as a strength in character. here is part of what I wrote for 2004 FALL newsletter............ Tips On Being Sick by Kathleen Blose Kathleen Blose has both POTS and Parkinson?s disease. The following are tips that have helped her deal with her illnesses. You Are Going to Have Rough Days No matter how strong you want to be, show yourself to be or even actually are, you are going to have rough days. They might be physical (feeling so sick and tired that you cannot get out of bed) or emotional (days you just want to explode-- when you are tired of being strong or when you want to quit being sick) or both. Well, that's ok. Give yourself permission to be sick, for an hour or two or even a day or two. What I mean is, if you're going to feel sick, you might as well ?enjoy? it. Don't let yourself play the guilt game or the "I should be" game (I should be stronger...I should be making dinner). Sometimes you just need to let yourself be sick. By relaxing and resting, you will be able to enjoy your life more?and sooner. It is Hard to be Strong If you are like me, you are strong for everybody else no matter how you feel. It's just the natural thing to do. You protect them from the pain you feel. Finding ?safe places? where I can let out my feelings has helped. Sometimes it is Not the Sickness but Just Life If a day feels worse than others, you need to look at what you did that day. Did you do a lot? Do you have a cold? Or are you just having a rough day? Are you feeling more stress? These factors can all affect how you feel. Know your limits, and your body-- then you will know why one day might be worse than another. You might even be able to predict rough days. You Cannot Do Everything To have energy for your family, you might have to lessen your load for a while. It takes some of the stress off and really does make life at this difficult time easier and less stressful, making life more enjoyable for you. Nobody Really Understands What You Are Going Through What you feel is what you feel. You will get a lot of support but nobody understands what you are feeling inside. Whatever you feel, you have the right to feel it. Sometimes you will feel strong, sometimes not, but be careful because I found that painful emotions were harder to fight than being in physical pain. Also, if I was very emotional one day, I would have to stop and look at why. Usually it was because I overdid it and I was really tired. You Might Become so Strong that when People See You they will Say You Look Great--You Must Be Feeling Fine. They are Misunderstanding that a Good Attitude and Being Strong Does Not Mean You are Feeling Well This might sound silly, but sometimes it would bug me, especially if it was a doctor who would mistake my good attitude for how I was feeling. If I lived the way I felt, my life would be too depressing. I think you will understand this as time goes on. Psychologists Can Be Good Seeing a psychologist doesn't mean you are depressed or weak. It is just a good source of support. It gives you one place where you are allowed to be weak. Being in a supportive place was a luxury I didn?t allow myself, and that was stressful. Remember that meds and illness can cause depression. Using a psychologist is a good way to understand this kind of issue. Medication and What's Happening Can Cause Depression and Lack of Concentration I believe medication and illness can cause mental changes like depression and lack of concentration. First thing to remember: there is no crime in being depressed. Second thing, it could be a side affect of your medication. Something else to be aware of when you can?t quite figure out what is going on. Support Groups, Web Pages and Chat Rooms Are a Good Source of Info and Support Talking to people that have gone through what you are going through is one of the best ways to keep informed. Being informed takes the surprises and fear out of what is happening. Writing Your Feelings in a Journal, or Poems, or Drawing is a Good Way to Let Out Feelings Try it. You might be surprised. I know that you will understand these TIPS- for you are indeed experience in handling your illness. Which mentally and emotionally is sometimes harder then physically. We have more power in ourselves to change our emotions (how we will react to situations) then we do our physical self. Take care of yourself - and please and get rid of any of your garbage. This is weird for me to say but you know the saying -one persons garbage is another person's treasures. I truly believe that people are being encouraged by you. Kathleen
  2. hi, I learned a few things on how to change my attitude about situations - to make living through those situations mmore livable-when I was going to therapy. I thought that maybe they might be able to help you change your outlook from the bad part of your situaton to the good part. First, you should be proud of yourself - you have to start looking at what you are doing instead of what you are not doing. You probably do have alittle too much on your plate right now- You should go to your advisor -tell them the situation - bring them information about POTS and how it effects you - be honest - tell them that you do not want to give your dream up but you need re map your schedule to give you time to rest so that you can keep up. They will be probably be very helpful and let you drop or postpone a class. When I had to stop classes due to finding out about a health issue the school let me drop the class at no cost to me. Talk to them- Tell them how important it is to you- i know they will understand and help you. 2nd- where does it say that you have to be super women. you- we - have a bad condition that effects us everyday. It effects us more then many well known illnesses- we are made to feel guilty because we do not get the reconition that we are really suffering something real. We cannot even hardly find doctors that have even heard of the conditions. No wonder you are made to feel like you are a failure for not being able to complete a full course. Not trying to be mean- but if you had a handicap that people could see - you would be an encouragement. If people knew what you had to go through everyday- you would be a motivator in their life- let people know- they will not pity or feel sorry for you - they will be like all of us here that are amazed at your courage and strength for doing what you do. 3rd- you have a condition- you need to learn more within it. that does not mean - completely listening to your body because if you did that you would haave to give up everything. But know when you can push and when you cannot. Know yourself- make sure you eat and drink and rest. If you have a busy schedule give yourself a little down time by organizing your day so you can give yourself a small power nap in the car. I do that all the time. Make sure your medication is on schedule . Know what you can and cannot do- if you cannot handle standing as much or if sitting is hard in school chairs- ask the teacher if you can use one of those new protable folding chairs - i have just found out they help me tolerate long periods of time sitting. Find the tricks that help you and use them. 4th you have to change your attitude from i am doing so bad to wow - i am actually doing this. i admire what you are doing , i wish i never gave up my dream by taking the easy way because i was scared. now i am applying for SS instead of living out my dream. I thought that i would be worse off now, but instead i am doing pretty good but i do not have a skill i can fall back on. I learned something from my physch doctor-if you can not change the situation then change your attitude towarads it. Yes - it is hard- stressful- and you feel tired and sick - you knew that would happer- but nothing says that you have to be miserable about it. You can be happy with life wven if it is hard and stressfull. by learning how to do this one skill -your life will change so much and will be much more tolerable. You have the power to be happy sick or miserably sick - now saying that - i know this hard to do and you will have alot of down time over this. That is ok- just do not let yourself be guilty . If you are going to feel guilty or overwhele might as well enjoy yourself - take a nap -relax- take a nice bath . The sooner you rest the sooner you will be back on your feet. I have a few more thoughts on the matter but I need to rest for awhile. I hope this helps-alittle bit. Kathleen
  3. hi, This is the haard and long way but going to a pyschologist and sorting throughthe problem made me learn hohw to overcome the emotional part of the depression to get me to the point to learn howto manage the physical part of depression. Don't get me wrong -I believe your depression is chemically caused by the POTS - but the never ending battle to overcome the feelings and to keep going onday to day with it and especially dealing with doctors almost did me in- finding a grreat psychologist really helped me over come the mental problems - and also helped me overcome some other problems - I never could tolerate anti depressants either. The best thing about a good psychologist is that it gives you a safe place to talk -whicih is the best medicine i ever found for depressiion- a place to release all those awful feeling dragging me down - wheni finally could get free of them all- i felt so free. Kathleen
  4. YOu might have to read some of my other post to understand this post completely- what i am about to tell you -does not make senses but it is true. I have told you i have Parkinson's diseade (PD) for which i got something put in my brain called a deep brain stimulator- DBS which worked till i had the battery changes in april. I kept it on for a month -which i kept getting a worse and worse neck pain- till i oculd not tolerate it- at the same time i had a bad head ache and i was more fatigue and i had the worse brain fog but i thought that was due to life with PD and POTS something i had to just live with. but the neck pain was too much so i thought i would try seeing if the DBS had anythihng to do with it. within minutes i felt like a cloud came off my head- i felt great- my neck felt better, my mood felt better and i felt free from the brain fog//////////what i thought was PD might actually be POTS???????????? Of course you guys cannot turn yourself off but i did get the PD/POTS doctor at NIH to look into it alittle bit -too see if my HR changes when i am turned on and maybe connect this brain fog with a chemical reaction to a release of chemicals in the body that results in the braub fog- this might be just coincidence but it was not till i read this brain fog items written here that it became clear to me that the brain fog that i was having was not PD - but this is what I feel like = to me it another piece of the puzzle thati been tring to understand- the reason i did not understand why i could not finish the puzzle was i was trying to put a PD pieice into a POTS puzzle / It makes so much more sense to me now. Now to get the doctors to listen. I know this is wierd- but maybe this little miricle that made me feel better can help other people -too. because i know that it felt great to ahve the fog lifted from my head. Everytime I turn the DBS on-ithe fog comes back- usually worse. Some of testing will be on and off DBS while getting blood samplles. By the way= the importatn fact about this is not what my body does but maybe this is something that doctors have never tested POTS patients blood for before- theree are certain chemicals that is involved with POTS- maybe there is a connection?????????? God bless Kathleen
  5. The brain fog is one of the worse symptoms. I have figured out my brain fog is worse when my HR is up for whatever reason- heat intolrance, over doing it, too tired new medications- has anybody expeirnce this? Katsusu
  6. Yes it is hard. I would suggest a general list that everyone could personalize for themselves.....but the real objective is to make a list so people start reconizing and understanding their own smyptoms. As you know this is the pain i get from this and this is my normal morning pain- yes it is not pleasant but it is liveable- but maybe today it is same place but it is sharper , more painful and my HR is worse............... see the difference- it has 2 purpose - to let you know what has become part of your life and what you need to find out more about so you can either get answers or understanding about- then if youhave to -you can live with it. I do not have alot of answers to my problem but i learned what is symptoms i have to live with without fear- because i ahve no choice..- and i am trying to understand the ones that cause me to worry so i can move on...... but i have learned it is not till you break it down that you can really accept it. i say thihs because i can look back at all the problems i have with the doctor and the disease that now I have become wise as far as my body goes- and besides..who knows your body better then you? Katsusu
  7. I am trying to make a list with the top 10 questions people have about POTS? Do you have an input?? Katsusu
  8. hi, On September 23, I will be admitted in NIH for a week of testing. This my third time - 2nd follow-up. I am one of the cases that they like to see me every 1 to 1.5 years. I have been put in the catogory of "special" but I think that is their way of saying "weird and abby normal" cases. I know it is really no fair that this is my 3rd time while many people just want to go in there for the 1 day testing. Remember what makes me lucky enough to go in 3 times is the same body that I have to live with everyday. You do not want to trade places with me. Trust me on that. A brief history- I have Parkinson Disease 13 yrs- POTS 4 yrs. they find me interesting because they like to see what will happen to POTS as my PD progresses. As for answers - I have learned alot - but that was from reading so I could understand what the test were about and could have inteligent conversation with the staff. But other wise - I can say that NIH doctors do not know what is going on in me. But the best thing is that even if they do not know why- they do believe me- something that mattered more to me then even answers. Anyways why I mention it is - I was going to put together a list of a few question that people in here have- and ask them to help us understand. But I want to give the most asked questions that would benifit the most. I am going to do a posting above -for ideas- I will see if i can get answers- I am not sure if they will _i think they will- it will not hurt to ask. Now- on a few lessons I have learned along the way - remember I have had PD for 13 years. I have had POTS actually for 7ish years but the first 3 years it was my mental problem while the last 4 years after they finally dx it had a name POTS. I just found out that a drug that I took for 7 years - 7 years ago might have caused my heart some damage and might be the root of all my problems with POTS. OK-now remember I have the symptoms froms POTS,PD, and I have a brains stimulator to control the PD in my brain that I just had the bateries changed and since then I had to turn it off because of side effects- but for some reason -i am better off the stimulator then I was on the DBS (deep brain stimulator). Which I know sounds confusing , but that is where I have learned some lessons - I want to share with you................. symptoms that i thought were PD -now I know could be POTS. 1st lesson- we have to start recording -our symptoms - in detail. We can not just say SOB- or chest pains- because if we do -it will be just used against us instead of for us. Also - the wrong kind of test might be done and that will close a door on us because -hey we tested you and there is nothing there. I had my heart tested- the test came back normal, so since that one came back normal- my chest pains never mattered again. but now _I find out that the drug I was on could have caused me to have heart valve problem- that was actually documented on one report as a slight regurgation- but when i asked about it - everybody said your heart is fine. After researching, I realized that my SOB and chest pains could be something totally different - then the normal "chest pains and SOB" - I have chest pains that make me feel like I have a super tight dress on- making it painful to breath or making me feel as if I was SOB. but if i was tested - my breathing functions and H2 would be normal- giving the doctor reason not to believe me. But now I know that I am not sob but because my blood might not be circulating as well- I may be having to work harder to get the normal amount of air. So, if they test me - my body will work harder naturally- but only I will know about it - and what kind of pain does it give me - chest pains. What I am learning is that we have to look at each symptoms individually and as a group as well. First -individually- chest pains, heat intolerance, sob, fatigue ...........ok- i can not handle heat.........why? It makes my HR raise- which takes my HR above what my body can tolerate comforably- it raises my Hr- which makes my heart work harder- then i get nausues - and get SOB - and start having chest pains - which by now i feel awful- i then get somewhat anxious because we do not know why I am like this - i go to the hospital and get more anxious because i just know that they think i am a mental case- and i become one - so on and so on. At the begining it is hard to sort out the symptoms because it acts like pick up sticks- by moving one stick it effets others in the pile- unless you are very careful and look closely. What I mean- is you might get treatment for chest pains but those pain killers might effect your BP/HR making you light headed- so on .............. It takes time and help (from places like here) to sort out the symptoms and know how they work-alot of research and finding the pieces - before you can put it together. Then -finding a doctor to work with you- Go in the office - and give him information about POTS- teach them if you have to. EXplain -why you cannot be compared to a normal persons HR?BP. I wear a HR watch so I can learn the HR areas that my body feels the best and worse at- then I know if i do not feel good and my HR is up- that is normal -in an nonnormal way. I know that my body is needing to rest- maybe i over did it that day. This goes with my theroy on the brain fog- I get brain fog the most when my HR goes about 10 points higher in my HR. Has anybody ever checked their HR when they had brain fog- is it higher- are you hot or tired- maybe you are not getting as much air - so you have to work harder whicih even makes it worse. What you r body wants is rest. but having POTS and PD -my body always losses out to my mind that trys to run the show -no matter how much my body is complaining. You may not pay now but later on your mind will have a bad case of brain fog. I have some more thoughts about this subject. but my mental fog is near me. i hope i make sense-at least a little kathleen
  9. HI, Chest pains does come with POTS- The problem with chest pains- is that after the docs, check it out - 2 or 3 times - then they start thinking that it is anxiety or mental- making us fear even saying it is there because if we do - we are afraid that we will not be taken seriously. I think - we need to start documenting and sorting out the different symptoms- so you can tell the difference - between chest pains-_CHEST pains -and chest PAINS. I know that when i had chest pains that it would be more of a chest PAINS rather then Chest pain that you would compare to heart attack. It would be nice if we could have someone design a symptoms guide or someplace where we could track the different symptoms. Something like the reply yesterday- but more descriptive. anyways - this is just an thought Katsusu
  10. Well said, and very well felt. There is a time thatyou have to realize that you know as muchor more about what is happening to your body as the people you go to.
  11. I know what I am about to say will not sit well with many but hopefully it will help some that keep searching for that unreachable truth. I just had surgery for the Parkinson's part of me. I had to travel a long way for this surgery so i stayed by the hospital for about 2 weeks. This is a hospital i have visited many times -so the doctors know me too well. They know mein neurology, neurosurgey, phsyciatry liason, and the ER. This trip would be my worst because i brought with me all the hurt and the frustration i kept all these years from being told it is in my head and having to deal with doctors that did not understand POTS. Plus having to deal with what Parkinson;s does to your head. Plus the effects of PMS , (which always has perfect timing of hitting when I need to be sane not emotonal basket case.) Plus - because i was traveling and dealing with pain issues i was on demerol. Before i go any future let me say the surgery was a success- but the rest of the trip was going to be doomed from the begining . I will not go into the details but i had so much hurt from the past- but if you mix the following - i was PMSing - and the demerol and the morphine fromhe surgery- and being told that part of my problem was Parkinson's Disease (PD) was causing me anxiety and depression issues. You could imagine what state I was in. All the ERdoctors had to do was look at me wrong- and I would want to run away in tears. After my last visit my friend i went to- said that she was not going to let me near the hospital because it would get me so upset- which when i was awawy from it-i was totally happy- enjoying what I could of life. As I read some comments, i can not help but wonder if there are others here with me that carry so many bad memories of doctors saying things or not being able to answer our questions or being able to help us- that we almost set ourselves up for failure. Does it hurt so much because all we want is understand and keep having hope and faith in our doctors- but when they question us-then our faith is broken in them, leaving us feeling all alome. Feeling like no-one understands. Does this sound at all familar.I had to look in the mirror and confess to myself that i have been putting myself and doctors through torture - always trying to find answers. I decided i needed to tale these steps o help myself more. i had to because my doctir said that my sx were due to pschycolgocal reason from PD. I was so mad but then i realized that i have been letting all my medical issues take over my life-yes it is distracting - not pleasant- painful but is it unbearable - is it worth almost losing a marriage over because i spend all -my energy tring-to get better (when maybe i could be working out or resting so i have more energy - less frustration for my family- i hate to say it but i have been self serving when i thought i was fighting for the family. Don't get me wrong i think you should fight and research but after a point you have to count your blessing and enjoy what you can when you can instead of pushing frustration and making yourself feel worst. You just have to know where is that line. i will stilll fight but i will choice my battles better. i need to forgive and let go of the pass.......... I need to accept that -even though there is a real problem causing my distress - that my emotions are usaully on over druve while in the hospital . that sometimies i have to stop looking for an answewrto everything Have some pity on ER docs- of course they are not equipped with knowledge of POTS What i am saying is we are letting our emotions make us into an derail emotioanl train rack. To survive we need to overcome and keep fighting/and sometimes to let go. If you see yourself at this place-i hope his helps. Kathleen -
  12. Let me explain alittl better -some of the things in his letter- As you know, the disorders under study in this protocol are highly complex. Adding to this complexity, patients with chronic orthostatic intolerance typically take numerous drugs, which affect the scientific results, and it is difficult to predict when temporarily discontinuing treatments will be safe. They have to be taken off some medication a week to 2 prior to going to NIH-which could be difficult. By any measure this protocol is also complex, involving multiple procedures and drug tests, and yet it does not entail a clinical therapeutic trial, so that participants may not benefit personally. they inject you with different chemicals to see how POTS and OI reacts to it -but this is only to get results -the information will not make our immediate life better but for PDand MSA they often can get some information that can make a difference right away. In light of the fact that we have other complex but worthwhile protocols, we have had to make some hard choices about which patients to study, under which protocols i am in a PD study at NIH- that is why i know this. Kathleen
  13. I wrote my friend at NIH and she sent me the letter that they are sending out about the protocol on POTS. She also told me that they are just too overwhelmed because - We get normally 2 maybe most 3 PETS per month and that is split between all protocols and we can only do 2 maybe 3 patients per month. PD, MSA, and PAF always has priority thus leaving POTS way behind. They do have an extreme small staff- that is very true. As the point about PD- Paarkinson's Disease- MSA - Multi System Atropy and PAF being Dr.gldstei's primary work - my PD part of me has to agree with that- he has found some very important findings on PD. Also,i do have to put his work on MSA in front of my concerns of PD and POTS -because that can be fatal. Iknowthis is not what you wanted to read but i know if Dr. goldstein had a bigger staff -he would and could domore - we need to write the headofNIH and ask for more funding for POTS then Dr. Goldsteincould do more. Dr. Goldstien's letter i am writing to let you know that I have decided to put a ?hold? on further accruals into NIH Clinical Protocol 03-N-0314, ?Clinical Laboratory Evaluation of Chronic Orthostatic Intolerance.? The main reason for this decision is that we have been overwhelmed by requests from patients and referring physicians for patient evaluations under this protocol, and sadly our small Section simply doesn?t have the resources to see all the patients, even though most qualify for inclusion in the study. Our contact roster already exceeds 50 patients, not counting self-referrals in numerous e-mail requests. We have the capability of studying perhaps 1 patient per month completely in the protocol, with adequate attention to arrangements for travel, medications adjustments, consent, scheduling procedures, record-keeping, confidentiality, adverse events reporting, reports to oversight committees, and correspondence with the patients and referring physicians, all on top of the actual testing and laboratory assays. Attempting to prioritize patients has also proven extremely difficult and very time-consuming. The decision making has usually been based on reviews of voluminous records rather than on in-person screening?a less than ideal option. As you know, the disorders under study in this protocol are highly complex. Adding to this complexity, patients with chronic orthostatic intolerance typically take numerous drugs, which affect the scientific results, and it is difficult to predict when temporarily discontinuing treatments will be safe. By any measure this protocol is also complex, involving multiple procedures and drug tests, and yet it does not entail a clinical therapeutic trial, so that participants may not benefit personally. In light of the fact that we have other complex but worthwhile protocols, we have had to make some hard choices about which patients to study, under which protocols. I do hope and expect to continue this protocol, which has great potential for improving understanding of mechanisms of chronic orthostatic intolerance and therefore for improving treatments for often debilitating, frustrating, multi-system disorders. We will keep you on our patient contact roster and will review the situation again later in the spring. Kathleen
  14. I will ask the person i know up there what is going on- i think she will giveme a truhful answewr. Kathleen
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