I have been seeing a therapist for awhile to help me deal with dealing with chronic illness and my anxiety issues. She is so wonderful and she talks with my other doctors - she is not a psychiatrist, she is a PhD psychologist. She works so well with my other doctors so we are all on the same page.
I had seen psychiatrists and psychologists in the past and hated them all and was nervous about doing it again. But she is so different. I've been seeing her since 2008 and it is amazing now and for awhile now that when I walk into her office - she always turns off all the lights for me! - my body is tuned to auto-relax and my pain level even though high right before - lowers. I've told her I would set up shop and never leave her office - as a joke. I think that when you find a TRUE SAFE PLACE that with anxiety making chronic migraine worse that after awhile your body recognizes it and does do an auto relaxation response - less fight or flight response. I also feel the same way at my acupuncturists office.
But I wanted to tell you about how much a real therapist who truly cares will go for you. I'll add that she says she sees a lot of strength in me and that she even has said she admires me and uses my (anonomously) experiences and reactions and abilities to learn for other patients.
Last year - about a year ago actually - I had an appointment and went to my car to drive there - it's close I don't drive often and only to doctors and close by - anyhow, I go to my car and it doesn't start. Well, you don't go try your car an hour before you have to go somewhere to make sure it works and then go back inside, do you? So, it's a surprise and a problem. I call the receptionist and tell her and here where I live a cab would take too much time. I tell her I guess I'll have to cancel my appointment and pay the fee. She says let me talk to the therapist and get back to you. She calls me back and says that my therapist wants to come and pick me up and doesn't have an appointment after me so can take me back home as well. WHAT??? I have never!!! So, I give her the address and directions and my therapist does this amazing thing for me. So incredible. We did not talk appointment stuff during drive - only small talk. She is very strict about therapy only during therapy session.
SO - today - this morning - I have an appointment and I have since moved but go to my car (I have not driven hardly at all in a while - no one lets me and it isn't a good idea but I thought my hubby was driving the car every so often) AND once again it won't start?!?! - can I believe it? NO. I call the receptionist once again and talk through the same issues. This time she suggests that my therapist may be willing to have the appointment via phone. And she was - since the phone can aggravate my migraine and tinnitus - I put the phone on speaker - also painful - so put on headphones and plugged into phone. It was great because I REALLY needed to have my therapy session.
THEN - if you can believe it - my therapist suggests that for our next appointment and possibly those after seeing how it goes that we schedule when she can come to my home and have session here! First she said she could pick me up and take me home and then she said - or I can just be there!
I couldn't believe it. All I can say is that is how you know when someone truly cares about your health. I didn't have to ask - she gave. She is very professional but is giving! To go out of her way for her patient is unbelievable if it hasn't happened - it is believable.
Also huge kudos to my other doctors who also go out of their way as much as they are able - so much caring.
I am so grateful!!!
As always love and best wishes
Always,
Elizabeth
Wednesday, June 22, 2011
Another guest post - My Momma dealing with Cancer and hair falling out
I couldn't help it - when I read my Momma's post for yesterday and talked to her today about how she shaved her head due to the chemotherapy - it was too powerful. She states that she had cut her hair short to get ready for the fall out and then when it happened she was upset and did she have the right to be? And most importantly she expresses such positivity even in the face of such hardship and it is so amazing. I am awed by her.
As I mentioned in my last post her website for her cancer info is http://www.nancyjo.info which gives a place for her to vent and for everyone to give her support and updates/schedules for her medical treatment.
So, without further ado - I give you my Momma via http://www.nancyjo.info Nancy's updates for June 21, 2011 - cancer a$$ kicker!
As I mentioned in my last post her website for her cancer info is http://www.nancyjo.info which gives a place for her to vent and for everyone to give her support and updates/schedules for her medical treatment.
So, without further ado - I give you my Momma via http://www.nancyjo.info Nancy's updates for June 21, 2011 - cancer a$$ kicker!
Today, the hair doth fall…. I reached up to pull down a bang and the whole thing came out. Now I knew this was coming but it hit me kind of hard.
I called Carolyn and she said you knew this was coming “you’re not crying are you?” … “No” I lied but I knew she was right…. it’s like when Tom Hanks said “There’s no crying in baseball” … how do I get to say … I cut my hair so I’ll be ready, then say I’m not ready.
It looked like rain outside so I thought I’ll sit out here and have a glass of wine and watch the rain fall… but even the world knows that this is not a problem… the sun came out as if to say “Bitch, quit it” … so today is a great day and tomorrow at 11:15 I’m getting my head shaved.
I remain constantly amazed at my Momma's strength. I shared with her the spoon theory and website
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ by Christine Miserandino that helped me so much years past when I was introduced to it. Her main website is http://www.butyoudontlooksic.com Anyway, my Momma grabbed on to the idea so amazingly well - seemed like better than I did and she talks now to me about how many spoons she has left before she decides to do something else for the day.
Love and Best Wishes to All as Always
Elizabeth
Friday, June 10, 2011
Thank You Lord, Ya Done Done It Again!
This is a guest post - the guest being my Momma who is going through cancer and Chemotherapy. She doesn't have really any insurance and we have worried a lot about her dealing with the financial issues and costs while she needs to focus on getting better. True to form, my Momma - is so positive. We - her best friend started and then we spread the word - had a first fundraiser to help with her medical bills on June 5th. It was a fish fry and raffle. It was awesome. This was my Momma's post on her website - http://www.nancyjo.info after the first chemo treatment and to thank everyone for the fundraiser. And I adore how she signs off as Nancy the Cancer Ass Kicker! My Momma so true to form.
The Title of this Post is a Phrase that my Grandma always used to say when the Lord got us through another battle or just another hardship - Thank You Lord, Ya Done Done it Again! And will be our Team's hat's at the Kansas City Komen Race For the Cure - which we have done as a family for YEARS. We have known so many who have survived or not survived breast cancer and Momma always has made us - and we are happy to - give back! We walk under my Grandma's name as a team as she survived breast cancer although has since passed but we feel her with us everyday. We also generally every other year do a family fundraiser for a local charity in need - however this year - we had to let that go in favor of Momma. Momma pushed us to give back to our community as well as to causes. And to WORK for them. I wish I felt better.
I wish I could sign off as the Migraine Ass Kicker - but I am feeling like I am in a losing battle. But NO MATTER - MOMMA is what matters and her first! So, I have below her post at the website linked and mentioned above after her first chemo treatment because I found it SO inspiring and I hope you will too!
From http://www.nancyjo.info
The Title of this Post is a Phrase that my Grandma always used to say when the Lord got us through another battle or just another hardship - Thank You Lord, Ya Done Done it Again! And will be our Team's hat's at the Kansas City Komen Race For the Cure - which we have done as a family for YEARS. We have known so many who have survived or not survived breast cancer and Momma always has made us - and we are happy to - give back! We walk under my Grandma's name as a team as she survived breast cancer although has since passed but we feel her with us everyday. We also generally every other year do a family fundraiser for a local charity in need - however this year - we had to let that go in favor of Momma. Momma pushed us to give back to our community as well as to causes. And to WORK for them. I wish I felt better.
I wish I could sign off as the Migraine Ass Kicker - but I am feeling like I am in a losing battle. But NO MATTER - MOMMA is what matters and her first! So, I have below her post at the website linked and mentioned above after her first chemo treatment because I found it SO inspiring and I hope you will too!
From http://www.nancyjo.info
First, I want to say I’m sorry for taking so long to add to this blog. Everything has sort of been happening faster that I can take it all in.
The fundraiser was amazing, but not just because of the money we raised but the great feelings of hope and love that I felt. My nephew came from Wichita… my cousins from Spring hill… my kids and their spouses and their families and friends, so many friends. I know my kids were just as grateful and amazed at the amount of love and turnout that was there. Plus the whole Ribbon Room family too. Carolyn is the most wonderful person in the world and Brad is so supportive. He and John nearly melted cooking all that great food. What a send off to my first Chemo… it’s no wonder things went so well! Thank you, Thank you, Thank you!
Monday, I got the port put in… hurt but not horrible. I now feel like a Borg, ready to be hooked up to receive the stuff that will kill the stuff. Lil Ron and Jane took me and I was the first one of the day. They were supposed to leave the needle in (they didn’t) so I had to have it put in on Tuesday… hurt, but not too bad (this may be a repeatable phrase a lot).
Tuesday, Chemo… this really went well. They load you up with stuff to keep you from getting sick first so I was relaxed and a little high. The actual Chemo did not hurt, just seemed a little odd knowing that you are being filled with poison. Veronica and Jane stayed with me and we snacked and talked and tried to come up with a game plan with all the different agencies we could apply too. Veronica is doing an amazing job calling and working with the agencies and billing people.
Wednesday, plastic surgeon did not have a lot to say as we don’t know how things will work or how much surgery I will need. But she took pictures and said she was ready to do whatever needed to be done. I liked her and am sure she’ll have a plan when she has more information.
So, that brings us to today, Thursday, I worked today and though I’m really tired I think it went well and will help me keep my mind off of other things. I also got a shot Wednesday that will help me make more white blood cells as well as make me feel like I have the flu. I know the flu part worked – let’s hope the white blood cells did too.
I’ve not been sleeping well, but I think that is a lot nerves and medications, but I’m very tired tonite so I hope to sleep better.
Thanks for all the good wishes and love. I so appreciate everyone of you.
This is Nancy the “Cancer Ass Kicker” signing off.
Sunday, May 29, 2011
Drama, anxiety, drama, anxiety....
I don't know how to even start. It's been awhile since I've been able to be on the computer for any length of time. I haven't been doing so well with the migraine and all my other illnesses/disabilities all feeding off each other don't help at all!
It seems that any activity I gear myself up for and build up my adrenaline because I still want to do things - but it comes at a cost - a crash of pain after. I went to see "West Side Story" at the Music Hall in April and went to see "Rock of Ages" at same Music Hall here in Kansas City in May. Awesome - but at a cost.
My youngest son graduated high school! Awesome and so proud of him - but attending was also at a cost.
Then I got hit with the most terrible news - my Momma has a tumor in her breast. As we waited for the results of the biopsy, my anxiety disorder took full hold. I was having attack after attack after attack - so much so I was starting to hallucinate hearing things - like someone in the house coming to get me and seeing things in my water and things tasting funny and oh my the smells - like all of my senses were in hyper-drive. I was so scared I kept almost calling for an ambulance but stopped myself because I wanted the focus to be on my Momma not on me being in the hospital. Momma thinks I just had the flu.
I got better - a lot better from where I was thinking I was dying and feeling like I couldn't breath - but anxiety still high.
Then, bad news, the biopsy for Momma was malignant and then after her appointment with the oncologist, it is large and grade 2 meaning it is very aggressive. They cannot do surgery until they do at least 4 rounds of chemo first. I want to focus on Momma - my anxiety is high but I am doing that and taking as best care of myself as I can so that I can focus on her.
Then to make things worse for some unknown reason my brother and ex-husband (father of my kids) who are friends, which I have always hated, but dealt with, have started crap with me attacking me and threatening my kids and telling them things that aren't true. I cannot figure out what this is about. All I know is that all 5 of us siblings got together to talk about Momma and my brother started up with me and I said I didn't want to get into anything because every energy and everything needed to be about Momma.
Well, he kept on me so I walked away. He followed and I said I won't fight with you because it all has to be about Momma - nothing else. Whatever you have on me, let it go and leave me alone - focus on Momma.
That didn't work - well, it did for me - he left me alone. He escalated things by calling my ex-husband and then my kids and my ex calling my kids and threatening them and saying lies and frankly nasty things about me that no child - even as an adult aught to hear true or not - although all were lies. And physically threatening my 22 year old son.
When I still didn't respond or react - trying to diffuse the situation - AND MY KIDS KNEW THEY WERE LIES - so we could re-focus on Momma. I today get a text from my brother that "I am no longer your brother fyi" - what? The argument wasn't even about anything that he was trying to start that I walked away from - just arguing to argue and I wouldn't do it!
Then my brother calls my son and tells him that my ex-husband is my brother's family and if my son is going to defend me then HE is no longer part of my brother's family either.
All I can think is WTF?!?!?!?!
I will not ever tell my Momma about this - she needs to focus on her not on whatever this is. But it is also sad because she is also a friend and I can't talk to her about something that is hurting me and my kids. But that is fine - best that she focus on her because she is going to need it and I can handle it.
I say I can handle it and I can. But, my anxiety level is now hit by pain, by treatments that aren't working yet, by my Momma and worrying about her and now also by this BS.
I send out prayers that I can handle the stress and anxiety so my health doesn't get any worse. I send out prayers that a calming hand will allow me to focus where I need to. And I will NOT REACT to this.
I always thought that walking away/not joining the fight diffused situations - but somehow it has escalated this tiny thing into something beyond my comprehension? I wanted to talk to my therapist this week about my anxiety and my Momma - and now I have to bring this into it as well for her to be able to help me. It just seems ridiculous and insane!
I try to think that my brother being worried about my Momma has him a little out of his mind - because it has for all of us. Just not this way he's going. BUT, it is NO EXCUSE for my ex-husband to threaten his children and say the things he's saying.
I stand by that I will not react or respond to this because my children have said they can take it and that they believe in me. I stand by that that is the best way to not escalate it further and to if not diffuse it - to be able for me to focus on Momma. And on my own health.
I wanted to write a post about the details of my anxiety disorder and the attack. But I guess I just needed to get this off my chest in some way without escalating things. Because he nor any of my family read my blog. So, I can send it out to space without escalation. And I can ease my anxiety perhaps a little by writing.
As always I wish you all the best of health and the best of everything,
Elizabeth
It seems that any activity I gear myself up for and build up my adrenaline because I still want to do things - but it comes at a cost - a crash of pain after. I went to see "West Side Story" at the Music Hall in April and went to see "Rock of Ages" at same Music Hall here in Kansas City in May. Awesome - but at a cost.
My youngest son graduated high school! Awesome and so proud of him - but attending was also at a cost.
Then I got hit with the most terrible news - my Momma has a tumor in her breast. As we waited for the results of the biopsy, my anxiety disorder took full hold. I was having attack after attack after attack - so much so I was starting to hallucinate hearing things - like someone in the house coming to get me and seeing things in my water and things tasting funny and oh my the smells - like all of my senses were in hyper-drive. I was so scared I kept almost calling for an ambulance but stopped myself because I wanted the focus to be on my Momma not on me being in the hospital. Momma thinks I just had the flu.
I got better - a lot better from where I was thinking I was dying and feeling like I couldn't breath - but anxiety still high.
Then, bad news, the biopsy for Momma was malignant and then after her appointment with the oncologist, it is large and grade 2 meaning it is very aggressive. They cannot do surgery until they do at least 4 rounds of chemo first. I want to focus on Momma - my anxiety is high but I am doing that and taking as best care of myself as I can so that I can focus on her.
Then to make things worse for some unknown reason my brother and ex-husband (father of my kids) who are friends, which I have always hated, but dealt with, have started crap with me attacking me and threatening my kids and telling them things that aren't true. I cannot figure out what this is about. All I know is that all 5 of us siblings got together to talk about Momma and my brother started up with me and I said I didn't want to get into anything because every energy and everything needed to be about Momma.
Well, he kept on me so I walked away. He followed and I said I won't fight with you because it all has to be about Momma - nothing else. Whatever you have on me, let it go and leave me alone - focus on Momma.
That didn't work - well, it did for me - he left me alone. He escalated things by calling my ex-husband and then my kids and my ex calling my kids and threatening them and saying lies and frankly nasty things about me that no child - even as an adult aught to hear true or not - although all were lies. And physically threatening my 22 year old son.
When I still didn't respond or react - trying to diffuse the situation - AND MY KIDS KNEW THEY WERE LIES - so we could re-focus on Momma. I today get a text from my brother that "I am no longer your brother fyi" - what? The argument wasn't even about anything that he was trying to start that I walked away from - just arguing to argue and I wouldn't do it!
Then my brother calls my son and tells him that my ex-husband is my brother's family and if my son is going to defend me then HE is no longer part of my brother's family either.
All I can think is WTF?!?!?!?!
I will not ever tell my Momma about this - she needs to focus on her not on whatever this is. But it is also sad because she is also a friend and I can't talk to her about something that is hurting me and my kids. But that is fine - best that she focus on her because she is going to need it and I can handle it.
I say I can handle it and I can. But, my anxiety level is now hit by pain, by treatments that aren't working yet, by my Momma and worrying about her and now also by this BS.
I send out prayers that I can handle the stress and anxiety so my health doesn't get any worse. I send out prayers that a calming hand will allow me to focus where I need to. And I will NOT REACT to this.
I always thought that walking away/not joining the fight diffused situations - but somehow it has escalated this tiny thing into something beyond my comprehension? I wanted to talk to my therapist this week about my anxiety and my Momma - and now I have to bring this into it as well for her to be able to help me. It just seems ridiculous and insane!
I try to think that my brother being worried about my Momma has him a little out of his mind - because it has for all of us. Just not this way he's going. BUT, it is NO EXCUSE for my ex-husband to threaten his children and say the things he's saying.
I stand by that I will not react or respond to this because my children have said they can take it and that they believe in me. I stand by that that is the best way to not escalate it further and to if not diffuse it - to be able for me to focus on Momma. And on my own health.
I wanted to write a post about the details of my anxiety disorder and the attack. But I guess I just needed to get this off my chest in some way without escalating things. Because he nor any of my family read my blog. So, I can send it out to space without escalation. And I can ease my anxiety perhaps a little by writing.
As always I wish you all the best of health and the best of everything,
Elizabeth
Friday, February 25, 2011
My Botox eperience
For my migraines, I had my first Botox treatment in late December. We have scheduled a second for the end of March. I was aptly told that it would likely take 4-5 treatments, every 12 weeks, in order to see if any progress could be made with my migraine.
The first treatment did not effect my migraine or my cervicalgia, however they also did injections in my traps and my back and shoulders are so tight with so many knots, it actually after 4-5 days released some of the knots. Not all, but progress. I am hopeful for more progress there and then up into my neck to start working on my cervicalgia. Working on this should help the migraine as one feeds off the other.
Interestingly, when I was at the neurologist yesterday and was mentioning how my Essential Tremor has, although improved some from last September, is still very bad in my left arm and hand mainly - although present and seen in my right hand - it acts up with any activity.
The interesting thing - my neurologist suggested and ordered more Botox and is going to have the neurologist who does the injections (they already were increasing number and amount of Botox) to put injections in my arm and see if it helps any my Essential Tremor.
I am excited, although patient and realistic, to see how things go.
I have heard from others how sore and painful their Botox experience has been. For me, my doctor gives me two Vicodin and a Lidocaine numbing cream for before. I take one Vicodin 2 hours prior and one at the time of my appointment. The Lidocaine cream I put on - well someone puts on for me - an hour before. And I did not have this soreness and painfulness. The injections did hurt - but no where near how bad my migraine hurts so easy to brush off for me. I also received Lidocaine patches for my traps for after the treatment to put on right away and then again the next day also because they said it would be really sore. That helped a lot and then I didn't get the experience others have mentioned.
I have heard others do not have doctor's give them the meds for this pre-treatment and perhaps it is cause of more pain. I know I definitely said I needed the vicodin again for my next session because what I had heard from others and I thought that must have tempered it.
I also can say that for my migraine - Vicodin does Nil, Nada, Zilch - no effect or help for migraine pain. I know others take Vicodin for their migraines and it helps which shows everyone is different - but for me, nothing. Same for other narcotics that I was previously given for migraines - Oxycodone and the like - did nothing for the pain. Maybe made me "care" less - be more out of it - not the Vicodin but these others - but did nothing to temper the pain. But did hinder my thinking ability even more than the Migraine does - along with other chronic illnesses - so I don't like them personally because I like a sense of control, even with the constant pain.
Anyhow - those are my thoughts and update on my Botox experience. Next up to look for - my month long drama with a problem with medications having nothing to do with doctors or prescriptions but insurance companies and going without and a change that made February so foggy. Thankful for my appointment yesterday that straightened some out and already seeing the me back again some. Hey there - missed you.
As always I wish you all the best health and best wishes.
Elizabeth
copyrighted by Elizabeth Wakefield
The first treatment did not effect my migraine or my cervicalgia, however they also did injections in my traps and my back and shoulders are so tight with so many knots, it actually after 4-5 days released some of the knots. Not all, but progress. I am hopeful for more progress there and then up into my neck to start working on my cervicalgia. Working on this should help the migraine as one feeds off the other.
Interestingly, when I was at the neurologist yesterday and was mentioning how my Essential Tremor has, although improved some from last September, is still very bad in my left arm and hand mainly - although present and seen in my right hand - it acts up with any activity.
The interesting thing - my neurologist suggested and ordered more Botox and is going to have the neurologist who does the injections (they already were increasing number and amount of Botox) to put injections in my arm and see if it helps any my Essential Tremor.
I am excited, although patient and realistic, to see how things go.
I have heard from others how sore and painful their Botox experience has been. For me, my doctor gives me two Vicodin and a Lidocaine numbing cream for before. I take one Vicodin 2 hours prior and one at the time of my appointment. The Lidocaine cream I put on - well someone puts on for me - an hour before. And I did not have this soreness and painfulness. The injections did hurt - but no where near how bad my migraine hurts so easy to brush off for me. I also received Lidocaine patches for my traps for after the treatment to put on right away and then again the next day also because they said it would be really sore. That helped a lot and then I didn't get the experience others have mentioned.
I have heard others do not have doctor's give them the meds for this pre-treatment and perhaps it is cause of more pain. I know I definitely said I needed the vicodin again for my next session because what I had heard from others and I thought that must have tempered it.
I also can say that for my migraine - Vicodin does Nil, Nada, Zilch - no effect or help for migraine pain. I know others take Vicodin for their migraines and it helps which shows everyone is different - but for me, nothing. Same for other narcotics that I was previously given for migraines - Oxycodone and the like - did nothing for the pain. Maybe made me "care" less - be more out of it - not the Vicodin but these others - but did nothing to temper the pain. But did hinder my thinking ability even more than the Migraine does - along with other chronic illnesses - so I don't like them personally because I like a sense of control, even with the constant pain.
Anyhow - those are my thoughts and update on my Botox experience. Next up to look for - my month long drama with a problem with medications having nothing to do with doctors or prescriptions but insurance companies and going without and a change that made February so foggy. Thankful for my appointment yesterday that straightened some out and already seeing the me back again some. Hey there - missed you.
As always I wish you all the best health and best wishes.
Elizabeth
copyrighted by Elizabeth Wakefield
Saturday, January 8, 2011
Just another day...
Many friends and family tell me of their days, their plans, the things going on in their lives. Some are good, some are bad and I love being a friend to listen and be there and love to hear what's going on.
Their days and plans seem so familiar to me as something I once had. And is missed. Even some drama going on - not that I want anymore than I already have - is interesting to listen to.
I have drama - a lot of it. And it doesn't all center around my disabilities. I have other drama unrelated or semi-related.
But here's my day - just another day...
I wake up to an alarm from getting hardly any sleep - any real, restful sleep to take my thyroid hormone because I have to take it at least an hour before I eat or take anything else.
I wake up a second time after not really back to sleep but curling up in pain and trying to erase the world. The second wake up is to a second alarm. This one to time to take out the trash and more importantly, to take my first set of medications and supplements for the day - primarily 1) to ease pain and 2) my medication for narcolepsy so that I can truly wake up.
Then, I wait, curled up and in pain waiting for a little release - and when it comes - that means it is time for my first set of meditation, yoga, and physical therapy exercises.
NOW - if I have doctor appointments during the day then I have to work around these - they may push back a morning exercise or if in the afternoon push one of those back - or delay when I can take certain medications so I am able to drive to the appointment and additional activity - especially outside - increases the pain.
Then comes time two hours after medication to take additional supplement and additional medication (we are attempting to separate some medications from others so I don't only have three times a day of relief possibly).
I have of course eaten breakfast with my first set of medications - or really second after they thyroid one.
Then I do try to do something calming and relaxing. I feel guilt about needing to do more around the house but am generally yet unable.
Lunch and mid-day medications. The pain has slowly risen back up again so I am anxious for this and then rest while I await another temporary reduction in pain. When happens, I have another round of meditation, yoga, and physical therapy exercises. This sometimes aggravates the pain so much needed rest.
Two hours later, I get the rest of my mid day medication.
IF I feel up to it, I try to do some dishes, some laundry and pick up - aggravates the pain. I also do my sink-bath. I am unable to take showers and can soak in the tub for some migraine relief, but bathing in the tub generally is too aggravating.
All of this has my Essential Tremor up and going strong and is difficult for me to do much else and if also the pain has risen up badly I am in resting state again. I try if I am able at this time to take the 4/10ths of a mile walk to the mailbox - I like the extra exercise but get nervous that I won't make it back home. I always have. Adrenaline is a push.
By the time my husband gets home from work at 6:30pm I am back in horrid pain and I feel guilt about not getting him to have the best part of my day with me.
I can generally eat dinner which he cooks for me - AWESOME cook that he is. (Note: he also cuts up fruit for me as snacks during the day as often I cannot eat a "meal" but need only to snack through the day).
I try to visit with him and do things with him but often it is him seeing me in pain and awaiting my evening medications to ease some pain.
Three times a week I can take an extra pain medication to ease off the worse days - good, but generally makes me sleepier. On a day when I take the extra pain medication - I may be able to have relations with my husband - but it is not a common theme. I miss being close to him and I miss him. He has gotten very good at holding my head cradling it so it is as still as possible - but always we both know my pain will increase.
Anyway - after my evening medications have had time to take effect it is time for my third set of meditation - which generally is skipped or interrupted due to not being alone - yoga and physical therapy exercises.
Again - this is a day without doctors appointments. Which interrupt scheduled times for things and cause need for additional rest and relaxation as pain spikes up.
In afternoons when I can, I work on calls that need made, bills that need paid, budgets, and other things that need taken care of - the phone causes additional pain if I am on too long or for some reason some voices.
In evenings I can sometimes relax and get on the internet for a little while. I do scheduled chats on http://www.chronicbabeforum.com when I am able to on Thursdays and Sundays and that is awesome.
I get calls from friends and family in early evening - a few times a week - to catch up with me and if I haven't heard from someone in a while I make the call.
Every now and again we have a couple people over to spend an hour or two - maybe just to play with my husband with all his toys - or to spend time with us. This also is SO wonderful and what I want so much. I do have extreme spike of pain when they leave - I think generally because I have been trying to hide my pain while we have guests. But we know that's going to happen just like going to the doctor will and so is well worth it.
My husband also works on Saturday and Sunday - generally Monday's off when he can just crash and relax himself. He also works at home on his building business as an artist - I love seeing his work which he always shows me whether that day or the next. He also spends time with his instruments and recording music - YES, he is an artist of all trades and awesome at all of them.
I also even though I am on disability - there is a lot of work to that - manage those issues and concerns. I also as I want to get better try my best to keep up my continued education requirements for my CPA license which is money out of our own pockets.
My husband takes time out to go to visit his family and to go out with friends - I think this is important - VITALLY for him - because if he waited until I could go with him he would start feeling trapped.
I am sick of daytime and even a lot of evening TV - but I have to have either music or TV on all the time due to my tinnitus. The best music is on my computer and sometimes the headphones get to be too much. I leave the TV on as a low background noise to temper the constant ear ringing.
We have family outings and with friends - although rarely - and always they know that it may just be my husband if I am unable to make it.
I talk to my kids - they are grown up - mostly through texts or emails daily with calls when we can and see them when schedules permit.
So, when my friends call and say what have you been up to? I am happy for the question, but also get tired of saying the same thing - all of the above. Don't they get it yet? Probably so but are asking and is good because there is news sometimes. Not generally my own but drama from other things.
So that is my just another day in the life. I used to say I missed my old life but I am not sure I even can comprehend that anymore. I just want a day - a week - with low pain where I am able to feel like a human being.
I keep trying and I will make it.
Another day in the life - keep trying and hoping...
Best wishes to all and wishing health and happiness.
Elizabeth
copyright owned by Elizabeth Wakefield January 8, 2011
Their days and plans seem so familiar to me as something I once had. And is missed. Even some drama going on - not that I want anymore than I already have - is interesting to listen to.
I have drama - a lot of it. And it doesn't all center around my disabilities. I have other drama unrelated or semi-related.
But here's my day - just another day...
I wake up to an alarm from getting hardly any sleep - any real, restful sleep to take my thyroid hormone because I have to take it at least an hour before I eat or take anything else.
I wake up a second time after not really back to sleep but curling up in pain and trying to erase the world. The second wake up is to a second alarm. This one to time to take out the trash and more importantly, to take my first set of medications and supplements for the day - primarily 1) to ease pain and 2) my medication for narcolepsy so that I can truly wake up.
Then, I wait, curled up and in pain waiting for a little release - and when it comes - that means it is time for my first set of meditation, yoga, and physical therapy exercises.
NOW - if I have doctor appointments during the day then I have to work around these - they may push back a morning exercise or if in the afternoon push one of those back - or delay when I can take certain medications so I am able to drive to the appointment and additional activity - especially outside - increases the pain.
Then comes time two hours after medication to take additional supplement and additional medication (we are attempting to separate some medications from others so I don't only have three times a day of relief possibly).
I have of course eaten breakfast with my first set of medications - or really second after they thyroid one.
Then I do try to do something calming and relaxing. I feel guilt about needing to do more around the house but am generally yet unable.
Lunch and mid-day medications. The pain has slowly risen back up again so I am anxious for this and then rest while I await another temporary reduction in pain. When happens, I have another round of meditation, yoga, and physical therapy exercises. This sometimes aggravates the pain so much needed rest.
Two hours later, I get the rest of my mid day medication.
IF I feel up to it, I try to do some dishes, some laundry and pick up - aggravates the pain. I also do my sink-bath. I am unable to take showers and can soak in the tub for some migraine relief, but bathing in the tub generally is too aggravating.
All of this has my Essential Tremor up and going strong and is difficult for me to do much else and if also the pain has risen up badly I am in resting state again. I try if I am able at this time to take the 4/10ths of a mile walk to the mailbox - I like the extra exercise but get nervous that I won't make it back home. I always have. Adrenaline is a push.
By the time my husband gets home from work at 6:30pm I am back in horrid pain and I feel guilt about not getting him to have the best part of my day with me.
I can generally eat dinner which he cooks for me - AWESOME cook that he is. (Note: he also cuts up fruit for me as snacks during the day as often I cannot eat a "meal" but need only to snack through the day).
I try to visit with him and do things with him but often it is him seeing me in pain and awaiting my evening medications to ease some pain.
Three times a week I can take an extra pain medication to ease off the worse days - good, but generally makes me sleepier. On a day when I take the extra pain medication - I may be able to have relations with my husband - but it is not a common theme. I miss being close to him and I miss him. He has gotten very good at holding my head cradling it so it is as still as possible - but always we both know my pain will increase.
Anyway - after my evening medications have had time to take effect it is time for my third set of meditation - which generally is skipped or interrupted due to not being alone - yoga and physical therapy exercises.
Again - this is a day without doctors appointments. Which interrupt scheduled times for things and cause need for additional rest and relaxation as pain spikes up.
In afternoons when I can, I work on calls that need made, bills that need paid, budgets, and other things that need taken care of - the phone causes additional pain if I am on too long or for some reason some voices.
In evenings I can sometimes relax and get on the internet for a little while. I do scheduled chats on http://www.chronicbabeforum.com when I am able to on Thursdays and Sundays and that is awesome.
I get calls from friends and family in early evening - a few times a week - to catch up with me and if I haven't heard from someone in a while I make the call.
Every now and again we have a couple people over to spend an hour or two - maybe just to play with my husband with all his toys - or to spend time with us. This also is SO wonderful and what I want so much. I do have extreme spike of pain when they leave - I think generally because I have been trying to hide my pain while we have guests. But we know that's going to happen just like going to the doctor will and so is well worth it.
My husband also works on Saturday and Sunday - generally Monday's off when he can just crash and relax himself. He also works at home on his building business as an artist - I love seeing his work which he always shows me whether that day or the next. He also spends time with his instruments and recording music - YES, he is an artist of all trades and awesome at all of them.
I also even though I am on disability - there is a lot of work to that - manage those issues and concerns. I also as I want to get better try my best to keep up my continued education requirements for my CPA license which is money out of our own pockets.
My husband takes time out to go to visit his family and to go out with friends - I think this is important - VITALLY for him - because if he waited until I could go with him he would start feeling trapped.
I am sick of daytime and even a lot of evening TV - but I have to have either music or TV on all the time due to my tinnitus. The best music is on my computer and sometimes the headphones get to be too much. I leave the TV on as a low background noise to temper the constant ear ringing.
We have family outings and with friends - although rarely - and always they know that it may just be my husband if I am unable to make it.
I talk to my kids - they are grown up - mostly through texts or emails daily with calls when we can and see them when schedules permit.
So, when my friends call and say what have you been up to? I am happy for the question, but also get tired of saying the same thing - all of the above. Don't they get it yet? Probably so but are asking and is good because there is news sometimes. Not generally my own but drama from other things.
So that is my just another day in the life. I used to say I missed my old life but I am not sure I even can comprehend that anymore. I just want a day - a week - with low pain where I am able to feel like a human being.
I keep trying and I will make it.
Another day in the life - keep trying and hoping...
Best wishes to all and wishing health and happiness.
Elizabeth
copyright owned by Elizabeth Wakefield January 8, 2011
Sunday, January 2, 2011
Happy New Year - Resolutions - PAH
First let me say a Very Happy New Year Wish to everyone for health and for finding answers and all that you need.
I hate the time of year of resolutions - I resolve EVERYDAY to try to get better, feel better, find answers, work on my health, etc. I don't need a time of year for it.
None the less, so many around me are wanting or resolving for me that this be the year I am cured.
Can I not say it enough that there is no cure for MANY of the disabilities I have, if not NONE. So I can only assume it is due to 1st) wanting me to be well and are heartfelt well wishes; 2nd) wanting to clear their own consciences. Now, I may be a bit of a hypocrite here because I started out with well wishes for health and finding answers. I think what I want, and resolve each day for is that for you and for me that we have better health, are able to manage our illnesses, and for those who remain undiagnosed, that they find the answers they desperately need.
I would love to say I need to lose weight and exercise more. My current problem as has occurred in my past as well is underweight and need to gain. I hate that people say their jealous I'm skinny, because they don't know all the troubles I have with it. I want to be a healthy weight - which many lately can definitively tell I am not and don't express things as jealousy. I used to hear, I wish I had your problem - trust me, you don't. Can you explain why I am hypothyroid and losing hair like mad but yet finally get my levels under control and still underweight and losing hair? Neither can doctors - in fact caused me to be undiagnosed for a long time.
Due to my constant intractable, transcendent migraine I cannot move my head to do much exercise. And tried Ensure drink to gain weight - and guess what - it contains, like many of them, as a first ingredient a type of hidden MSG - making migraine worse.
My narcolepsy keeps me from any good sleep and tired all the time, not that the migraine helps.
My Essential Tremor gets so bad that I can hardly feed myself let alone other things - and makes strangers wary of me.
Okay - obviously I have a lot of anger - and primarily due to anxiety. I go so fast from sadness, loss, and loneliness to anger at people or things I have to manage.
I am SO GRATEFUL for my husband and feel badly for him having to deal with all my issues.
Then, on top of everything I got another blow I wasn't expecting with my ex and how he is interacting with my children. I express concern and get the same as I get "the strong one" that my kids are strong and they will survive it? What? Get mad? I can't be the only one... I can't do much to help. Yet, I will be the one that does the most and takes care as much as I am able to ensure their happiness and health - while putting my own in jeopardy.
My husband is just as angry as I am about this. But not much he can do with working all the time to take care of me. And not having solutions himself having not had children or dealing with an ex.
So, I will continue my daily resolutions and ignore the stupid time of year where I am supposed to make an overwhelming resolution.
I get day to day. And I try when I can to improve day to day and find ways. Some days that isn't possible.
I will try with my therapist to help get this anxiety under better control. My anti-anxiety meds should be doing their job - it's just I've been hit so many times lately and as my therapist said, I should feel loss and I should feel angry.
I will try to associate with people who are better at understanding and helping me. And I will try to accept people for who they are. Not a new resolution - same one every day.
So PAH I say to New Year's Resolutions! Resolve everyday to do better, and try...
All the best as ever,
Elizabeth
I hate the time of year of resolutions - I resolve EVERYDAY to try to get better, feel better, find answers, work on my health, etc. I don't need a time of year for it.
None the less, so many around me are wanting or resolving for me that this be the year I am cured.
Can I not say it enough that there is no cure for MANY of the disabilities I have, if not NONE. So I can only assume it is due to 1st) wanting me to be well and are heartfelt well wishes; 2nd) wanting to clear their own consciences. Now, I may be a bit of a hypocrite here because I started out with well wishes for health and finding answers. I think what I want, and resolve each day for is that for you and for me that we have better health, are able to manage our illnesses, and for those who remain undiagnosed, that they find the answers they desperately need.
I would love to say I need to lose weight and exercise more. My current problem as has occurred in my past as well is underweight and need to gain. I hate that people say their jealous I'm skinny, because they don't know all the troubles I have with it. I want to be a healthy weight - which many lately can definitively tell I am not and don't express things as jealousy. I used to hear, I wish I had your problem - trust me, you don't. Can you explain why I am hypothyroid and losing hair like mad but yet finally get my levels under control and still underweight and losing hair? Neither can doctors - in fact caused me to be undiagnosed for a long time.
Due to my constant intractable, transcendent migraine I cannot move my head to do much exercise. And tried Ensure drink to gain weight - and guess what - it contains, like many of them, as a first ingredient a type of hidden MSG - making migraine worse.
My narcolepsy keeps me from any good sleep and tired all the time, not that the migraine helps.
My Essential Tremor gets so bad that I can hardly feed myself let alone other things - and makes strangers wary of me.
Okay - obviously I have a lot of anger - and primarily due to anxiety. I go so fast from sadness, loss, and loneliness to anger at people or things I have to manage.
I am SO GRATEFUL for my husband and feel badly for him having to deal with all my issues.
Then, on top of everything I got another blow I wasn't expecting with my ex and how he is interacting with my children. I express concern and get the same as I get "the strong one" that my kids are strong and they will survive it? What? Get mad? I can't be the only one... I can't do much to help. Yet, I will be the one that does the most and takes care as much as I am able to ensure their happiness and health - while putting my own in jeopardy.
My husband is just as angry as I am about this. But not much he can do with working all the time to take care of me. And not having solutions himself having not had children or dealing with an ex.
So, I will continue my daily resolutions and ignore the stupid time of year where I am supposed to make an overwhelming resolution.
I get day to day. And I try when I can to improve day to day and find ways. Some days that isn't possible.
I will try with my therapist to help get this anxiety under better control. My anti-anxiety meds should be doing their job - it's just I've been hit so many times lately and as my therapist said, I should feel loss and I should feel angry.
I will try to associate with people who are better at understanding and helping me. And I will try to accept people for who they are. Not a new resolution - same one every day.
So PAH I say to New Year's Resolutions! Resolve everyday to do better, and try...
All the best as ever,
Elizabeth
Subscribe to:
Posts (Atom)