icesktr189

Be careful with askapatient if you have med phobias lol. It made mine ten times worse, so my therapist ordered me to stay away from it I have taken YAZ when my POTS was a lot better. It gave me panic attacks, made me break out and i just didnt like it. However, you will never know until you try it because BC vary so much person to person.

I really want a PORT, but Dr. Goodman wants me to try more meds first :/ I really hope he eventually gives in because my mom who has POTS also has a PORT and its a life saver for her.

Its so nice to be able to relate to all of you. When I talk to my mommy friends about this stuff, they really don't get it. I say I am exhausted and they say they are too, but unless you have experience the chronic illness exhausted, then you really don't understand. I just feel like I am trying to survive each day at this point. I look back and laugh because I thought the newborn stage was tough, but at least they didn't move! It doesn't help that my 3 year old is super spirited and a normal adult probably couldn't keep up with her lol. I think my saving grace will be her starting pre k. I feel really bad about being so excited about her going, but I feel like she is not getting enough attention from me everyday and really needs a playmate. Lately, I have been really wondering if I want more kids in the future. I would love another, but I just cant keep up. I feel very bad though because I don't want her to miss out on a sibling though. I will def try that scavenger hunt! She loves stuff like that. My mom helps out a lot,, but she also has POTS, so her energy is limited too. It stinks not being able to be the parent you want to be :/

I feel like I cant keep up with life a lot. When my POTS is bad, I am not able to take my daughter to the park, cook, clean or anything. I basically just do the basics like bathing her and making sure I keep her alive We have been eating a lot of take out and fast food this past couple weeks because I am in a flair. My house isn't disgusting, but def needs to be cleaned, but I just don't have the energy. How do all of you keep up? I only have one child who is 3 and I cant imagine having more in the future at this point.

Just remember midodrine is in and out really quick... like around 4 hours. Start at 2.5 mg because that is a very small dose. I am too VERY afraid of meds and it got so bad that I would give myself symptoms after I took one. Therapy has helped a lot. I am now forbidden from going on askapatient.com or looking up all the side effects before I take it. My therapist says that if I do experience something out of the ordinary, just to call the pharmacist and ask. Do NOT google! I have even sat in a hospital parking lot before just to calm me down. Good luck!

Congrats Issie! The smells can get to me sometimes too. I don't think I have a true sensitivity, but smells are always a problem. I have been using bleach for my highlights and haven't had any issues so far! It has helped a lot that now I see an actual hairdresser too

I thought my hair color was making me worse, but it turned out that it was because my hands were above my head too much while trying to do it myself. Now that I have someone else doing it for me, I have no more issues.

My daughter is 3 and its very hard. She has so much energy, so its really hard to keep up with her. I need a lot of help from my mom who only lives a mile away from me. Most days I am just trying to survive lol Thankfully she is starting pre school soon, so I will get a much needed break!

SSDI is disability insurance that you paid into through taxes from working. You either qualify for this or not by how much you paid into the system. You can actually go on the SSA website and it will tell you your earnings and how much you would get. If you don't qualify for SSDI because you didn't make enough work credits, you can receive SSI. SSI is a welfare based program. If you were to receive SSI, you would receive Medicaid (state insurance) and not Medicare (only for those on SSDI). With SSI, the most they will give you is around 711 a month. They figure out the amount by going off of how much your household income is (if you have a spouse or someone that lives with you, that is contributing to your income, they will include theirs too). If you make too much, you will not get any SSI. This is important to figure out because a lot of the time, its pointless in applying for SSI if you know you will be over the income requirements. With SSDI, they do not care how much you make. When you apply, they will automatically apply your for both programs. There are a lot of people on both SSDI and SSI because their SSDI amount was lower than 711 a month. If you have any questions feel free to PM I just went through this crazy process and it took two years!

Katybug- My process was 2 exactly! Dont be afraid, my lawyer did most of the talking for me, and it only lasted 15 mins. Seattle Potsy- did you get approved at reconsideration or ALJ??

So I FINALLY have internet set up at my new house! Been in a major flair from moving and finally seeing the light at the end of the tunnel Wanted to check up on everyone and get updates! I am still waiting for part of my back pay. I guess they lost it.... just crazy.

I am 23 and on SSDI and have 1 child who is 3 I plan on having more in the future if I see improvement in my POTS ( I am not ready any day soon though! ) You never know what the future will hold!

I am not sure of the exact technical name, but its known as the Arizona Bark Scorpion. They are the only one that can climb walls. Ugh gives me the creeps because they can drop into your bed. I have the exterminator spray for everything! He put scorpion traps everywhere too. Hopefully this nightmare will be over soon!

I moved into my new house a couple weeks ago. Last week I was stung by a bark scorpion. Oh the joys of living in Arizona.... They are very poisonous, so it caused extreme pain, numbing all over my body, dropped my blood pressure, my heart was racing for days, and my eyes couldn't focus. Its been horrible. The pain is mostly gone, but my POTS is a complete mess. I should have got the anti serum, but they only do that for kids, the elderly, and if you have an allergic reaction. So yes, getting stung by one does make POTS worse :/

A week and half ago my sister asked me to watch her kids on the 13th and the 14th. I told her what I always tell people, which is that it depends on how I feel. Well, this week has been very crazy and stressful because we are moving next week and I have been on the phone all day with the leasing agent. She then texts me about an hour ago and basically says well thanks a lot. I guess I will find someone else to watch them. I feel like crap about it. I haven't heard from her all day and this is the first thing I hear. It just really upsets me because she knows about my illness and I haven't even left my house in 4 days. I keep rescheduling going to my moms house because I am just too weak and tired. I hate when family and friends make you feel bad for things that are out of your control. We are not super close because we didn't grow up together, so now its kind of awkward. I really just don't even know what to say to her. I just needed to get this out.. thanks for listening

If you search on this site, I have talked extensively about the start up side effects. They are not pretty, but they go away. Unless you are having a severe allergic reaction or your no and hr are way out of control stick it out! The first two weeks are the worst. I had severe anxiety, to the point I couldn't sit, sweating, pupil dilation, and tons of other crazy symptoms. They all were completely gone by week 4. I saw major improvements with lessors. It was a miracle drug for me. Good luck and remember it will pass!

You def want to know if you have EDS before a pregnancy or surgery. My OB freaked when I was 9 months pregnant and thought i had EDS because if yiu have the vascular kind, you can die during childbirth.

Back pay*

Thank you! I am actually considering waiving my SSI because it would be a very small amount of packets and it wouldn't even affect my monthly payments. I feel so sorry for those with concurrent claims. It's horrible. They check every bank account, anything you own worth value, extra. I understand why they do it, but I wish they would give you more time. I had to reschedule my interview because I missed one piece of info. The process is horrible and so frustrating. I know of so many cases where the claimant has a concurrent claim and it takes months to recurve anything because everything is places on hold

I thought after getting my approval, it would be smooth sailing from here. Boy was I wrong. I am the most stressed out than I have ever been during this whole process. Just a tip, if you are sure you dont need SSI,,DO NOT apply for it. I dont even qualify for it for my monthly payments, but some how got some for my backpay and it has been a choas of many phone interviews, finding information for my "spouse" even though we are not legally married. How the heck can I find out every single place he has worked, with the exact dates of employment AND with every single paycheck stub since 2009?!? Yeah, let me get right to that.(which is due in just a couple days) They still cant even tell me what benefits I am getting or how long everything is going to take. All I hear is some generic answer over and over. I know I shouldnt complain because i am very lucky to even get this, but i guess all the stress of these past two years is finally hitting me. I just want this to be over already. My lawyer cant help me until I recieve my award letter, and that wont happen until i get all tnis SSI stuff taken care of and it feels never ending. Ugh rant over. Thanks for listening :)It feels good to get it out because there is not a whole lot of places I can talk about this.

Yes my mom and I both have POTS. Mine started at 18, hers started at 50 for whatever reason. We both see Dr. Goodman and he thinks its either autoimmune or a connective tissue disorder. My nana also used to pass out. It seems to get worse every generation. I pray my daughter doesnt get it

For me, I just wanted to get it over as soon as possible. I def understand why people move up slowly, but my SO was going out of town at the time, and I didn't have months to deal with it. I have started up SSRI twice before. One I just took the full amount, and the other,.I took a fourth of a pull. Honestly, they both sucked. I was a but worse with the higher dose, but both times put me in bed for the first couple weeks, so it's not a huge difference.

I did it differently lol. I hate havng to go through months up uping the dosage,so i just took the full dose of lexapro all at once and uffered through two weeks of misery. Good news is all those horrible syptoms do go away, and I had an amazing benefit from it. Dont give up. Remember, it takes a good six weeks for a normal person to get positive benefits. I found the first week ws the hardest.

I am so sorry. I have been in your shoes countles times and felt completely hopless and out of control. Please take it ffrom me, it DOES get better. Actually my POTS is not that much better from where I started, but I can now wrap my head around it. After time your nervous system will calm down. Have you tried an SSRI? They work great for POTS and anxiety/depression. Also a benzo to get you through the wprst days. If you feel just too overwhelmed, have someone watch the baby and check yourself into the hospital, so they can get you stable on meds. Good luck and remember, even though its so bad right now, it will get better!

Thank you!!! So happy its over!