Well guys, I think I overdid it yesterday. I think I was on a kind of an adrenalin rush of feeling so good. I rode my recumbent bike a little, walked some and still felt OK. Then I went to choir practice. Had missed that so much and was really looking forward starting our Christmas Cantata practice. I have always been proud of how many measures I could hold out a note. I was taught proper breath control by my high school concert choir teacher and have just always done well. Well I didn't do it well last night and I was exhausted afterwards. You add on to that the fact I can't take any Aleve or Motrin for my bursitis in my legs and I was really hurting last night. So one very lousy nights sleep. We went to Walmart today and even though I hated doing it, I rode their scooter. It just really affects your psyche. But i knew I had to ride it or I would really be done in.

My heart rate is steadily in the mid 50s now. I was changed from Tenormin to Toprol. I would like my blood pressure to be a little lower but it sure is lower than what it was.

I don't think Charlie thinks much about us now being a 5 stent family. The way he eats, it won't be long before he has more. He is just glad I am not suffering anymore. He asks me about my blood pressure a lot, what my pulse is. Still takes care of me.

Have any of you ever used Icy Hot or a Lidocaine pain patch? I sure miss my Aleve for my back and my legs:(

doydie,
I think Nancy has a good point about overdoing it. I almost forget MS is in the picture. Good to be active; but not overdo it. You have worked with Charlie for quite some time with all his problems which had to take a toll.

In response to Lidoderm. Yes, I use the Lidoderm patch on my spinal issues/lower back/hip, etc. Haven tried the Aspercreme, but they have a product with 4% Lidoderm compared to Lidoderm having 5%.
I don't use Icy Hot; but do use Therapeutic (blue) Mineral Ice (sold at Walgreens and other like stores) for several year on all these places as well. Very helpful.

Good your hear rate has remained steady. Evidentially the effects of the stent as well as new meds are playing a good part in your feeling better; but please take care.


Gerry

Took my first walk on the mall today. Now before when Charlie and I were walking on the mall, I would do about 10 laps and he would do much less. I didn't have arthritis then :eek: I did 3 to his 5 and had to stop twice :eek::eek: My hips hurt! I have found that I can slowly ride my recumbent bike with no pain but tonight I am really tired. I guess you girls are right and I need to listen to you. Plus it is just down right disappointing for me to only walk 3 to his 5 and that gets me down. But my B/P and pulse are fine. I see my family doc next week and I think the cardiologist. When did the family doc stop seeing patients and it was left to nurse practitioners????? When I see the cardiologists that deals with my rythem, I see her NP. Next week I see the pulmonologist and who do I see.....the NP. And the co-pay is the same.

And why do I have to 'unsuscribe' when I get an email from some one I didn't subscribe to in the first place?

doydie, you are so right about the PA (physician Assistant). Since I am on a top tier of pain meds, I have to get my scripts monthly with no refills. I have to be seen every month. The first 3 monthly appointments are with the PA and my 4th is with the Pain Management doctor himself. WOOoooo; isn't that great!!! Charge is the same; doctor or PA.

Good luck with your appointments.

Good question;;; why do I have to unsubscribe to receiving emails I never subscribe to receive in the first place??? Next thing they will be asking if I really do want to unsubscribe......the nerve....


Gerry

doydie,

just remember that these physical limitations won't last forever. i think that over time, as your body heals, you'll get more strength back.

i used to try to unsubscribe but somehow i think it's a racket. the more i tried to do it the more e mails i got. it's really a pain how many unsolicited things i get but i just erase them.

btw...i think you're doing fabulously.

For my Lortab (Narco) all I have to do is go and pick the script up at the office. I don't have to see anybody. Plus it is written for 50 and I only take one/day so it lasts awhile. Las night I took 1 1/2 to see if it would help me relax, I also took 1/2 of the muscle relaxant. It does seem to work but I just wish I didn't have to lay in bed for almost an hour. I thought Ambien worked faster than that. But I'll take it.

When I bought my new Vorizon phone i got A LOT of emails I had to unsubscribe to. then it stopped, now I am getting about 1 or 2 a day. None of it like the ones I got before like how to improve an erection.

doydie,
Although Narco is a narcotic med for treating pain, I would think it would be somewhat relaxing as well. I take an Ambien CR every night. I usually take it at least 1/2 - 3/4hr. before going to bed. I don't like to lay in bed either waiting for it to take so I watch a bit of TV before heading to bed . The Ambien really helps me to sleep without pain keeping me awake.

I agree, you appear to be doing great.


Gerry

Unsubscribe
 

Check who you have given your email address to; contact them and ask them to remove it from their records. So if you give out your email address in future it pays to ask you will my electronic email address be "sold on". I never give my email add anymore, you might innocently provide it to a local charity, a pharmacy, a lottery event, a competition, even the local politician. I learned the hard way they sell email address listings as a source of income.

I can take my Ambien and 5 hours later still awake. I am finding that taking my muscle relaxant, Ambien and Narco right before I go to bed and laying still, plus that's the time I have my long daily talk with God, it is giving me a fairly good nights sleep.

Hmm, I think the last person I gave my email address to was my dentists office. I see them tomorrow for a long overdue cleaning. I will have to remember to ask them.

I am doing my share of keeping the doctors in Evansville paid. This morning I had lab work, then came home and ate lunch, brushed my teeth real good, went to the dentist, came home and then went to pulomonogist so I could get new c-pap supplies. Tomorrow I see my PCP, come home and eat then go see cardiologist. Wasn't due to see her until next week but my b/p is running all over the place. Went down to 80/50, pule 100 and real dizzy. Pulmonologist thinks a lot fo my tired feeling is due to my concoction of medicine I take at bedtime. So tomorrow I talk to PCP about that. Then the cardiologist will go over her list of medicine along with what PCP has me on and seeing if that is what causing my erratic b/p. Plus pulmonologist says I need to change my computer habits so maye that will be the answer as to why it takes so long for me to get to sleep at night. A lot to think about.

yes, teasing all these things apart takes time & experimenting.
i agree about the meds.

let us know what they think.

Glad you are doing better. It takes time to heal and to build yourself back up. Don't be too hard on yourself. I think you are doing great.:hug::hug:

I, too, wonder if the combination of medications you take at night are contributing to not only the fatigue but the BP and pulse issues. Granted, I'm a lightweight and what you take at night would knock me out for a few days.:D I can only hand 1 5/325 Norco at a time. I took 2 in the hospital one night and my BP plummeted. It was not fun. Since my BP generally runs low, if I need to take narcotics or anything like that, I space the timing out a bit. Like, take my muscle relaxer (I take Ativan as the others were too strong for me) and then 2 hours later take my Norco or Tylenol 3. Maybe spacing them out a bit will help your BP and pulse.

Let us know how your appointments go.

Trish;

I was about to do a very similar response to doydie regarding the combination. I really think they may play a part in some of the issues she is dealing with.


Gerry

doydie,
The stimulation the computer may very well play a part in taking so long to get to sleep. The combination of meds may also be at issue, along with adding to the erratic B/P.

You sure have a busy schedule, along with helping the medical field with their expenses.
Looking forward to your sharing some of the findings from your medical crew.


Gerry

Well my PCP nurse practitioner said if I need to stay on the schedule of pain medicine/muscle relaxant/sleeping pill then I need to do it.She did give me some samples of called Flector to see if it works. Total of 4 patches and they are a 12 hour but I only need it at bedtime. I did try to change my screen time last night and it didn't help but that doesn't mean I still won't continue to try it. They did a test of my b/p and pulse sitting and then standing and walking about the distance from my bed tot he bathroom. Upper reading on b/p went from 15o to 130, pulse went from 60 to 118.

Then I went to the cardiologist office. Their b/p and pulse reading were about the same. So I am to take the water pill out of the b/p pill (glad I still have them at home), make a spreadsheet of what time I take what pill and what b/p readings I have after. See her in 2 weeks and will discuss that. I may need another tilt table test which it's main goal is watch you pass out on monitor. The cardiologist that handled it before said if I continued to have trouble she would send me to a clinic at Vanderbilt. So I am just hoping that taking that water pill out will help. Of course when I did that before, the edema came back in my legs.

I am tired and spent a bunch of money in the last 2 days seeing 4 doctors.

I feel like all I do here is being a whiny butt and I don't like that.

Actually doydie, I find this very helpful. I take Spirolactone (Potassium saving water pill) daily. My blood pressure was still fairly high even with the Lisinopril until I took the water pill. It was like "magic". I do have some Edema; especially in my left ankle; that's why I am taking the pill. The "plus" side effect was lowering my blood pressure and lowering my dose of Lisinopril.

The same with the thread for Charlie's; I have the possibility of going his route; so I find his thread informative as well. Also, your description of him is endearing.

In any case; don't see any whining. You have a way of putting a bit of humor in your responses which often brings a smile.

Thank you for sharing.


Gerry

it's ok to be a whiney butt.
we do whiney butts very well.

at least til you feel yourself. then you can pass the whiney butt torch to someone else. :)

Whine away, Doydie! You certainly deserve the Whining Crown as you have been through so much with not only Charlie but your own health.:hug::hug:

I am glad to see the doctor recommended the spreadsheet and monitoring. That will help in determining if the medications are effecting your bp and pulse. How did the patch work for you? Hopefully, it provided enough relief for you so you could sleep.

The patch worked really well. I only had enough for 2 nights. Silly me, when I got 2 boxes and they both had 2 patches, I assumed without thinking that I had 4 days worth. But i forgot that I had 2 legs!!!! Minor thing:p So I had 2 nights. But it worked. They require a prior authorization and I got a call today saying it was denied. So the doctor's office is going to have to decide if they appeal or use a gel or whatever.

It took some nerve wracking times between my daughter in Lexington, ky and me here but I got the spread sheet made. She picked a really bad time cognitively for me to do my end. I had to download Google spreadsheets, find my gmail address and password. Send a picture of the crude thing I made. So she finally got it made for me. Now it is up to me to figure out the best way to make it good information for the doctor. The evening is the best time for me. I have a friend coming from out of town tomorrow and wants to meet some of the 'old nurses club' for lunch so that means I have to take a shower tonight. Do not look forward to that.

B/P was down to 71/50 while I was standing, my evening it evens out. But as you know with MS, it is hard to begin with with the hands above the head kind of exercise.

I will gladly pass the whiney butt baton to anyone who wants it. I am not used to feeling like this. It takes my choir away from me. Since mornings are my worst, it takes church away from me.

Kids are coming in Sunday night!!!!! We have a local amusement park, Holiday World, it has many international wards on it's roller coasters. It has a wonderful water park and a really neat water roller coaster. Parking, any soft drink and sun screen is free and available everywhere. They always loved my scooter and handicap pass. It lets my daughter go and get a time and then we just go up the handicap ramp and get right on the ride. On the roller coaster that means first row seats. It used to be an annual trip for us. We pay for all of it unless they want souveniers. Well we can't do it anymore. So daughter ad family are going Sunday and then come here and then go home on Monday. If I can't figure out my spreadsheet by then, she will help me.

sounds like a good plan. enjoy your family.

Today is the first day my B/P has not bottomed out or even gotten to what anyone would call low. I have not had any lightheadedness. I have had some labored breathing but very light. I was able to go out to Logan's Roadhouse when a long term nursing buddy came into town and she organized a last minute get together. Because of not sleeping well because of bursitis I am really tired.

This is our 44th wedding anniversary and told DH that we need to wait until another day to go to Red Lobster. I don't think even fresh warm cheddar biscuits can pick me up today.

Doydie; wishing you and Charlie""Congratulations"" on 44 Years of "wedded bliss".

You had a busy day, minus a decent night's sleep; understandably you are tired. Of course, you are still in recuperation mode too. It is a good idea to pass celebrating at Red Lobster on another day.


Gerry

These 44 years have not been wedded bliss. When my girls were young, one time they asked me why I never divorced him. He is what he says a perfectionist, but what that means he wants us to do things perfectly and if we don't, he is very angry. But he doesn't do any thing perfect and always gives a reason why he isn't doing it right. The girls were in the typical things kids are in like softball, music. Now he was the pitcher for many years on his baseball years. he is a wonderful singer. So when he would go to their games, he hated it and would get mad when they lost a chance to do something right. Music, he would go to one concert and they didn't sound professional and wouldn't want to go back. Well of course they are professional. They are teen age kids. But you have to audition form all 12 schools in the area to get a part. He has the mouth of a sailor and has a lot of road rage.

When he became a Grandpa he became more gentle. He eventually learned to see what other Dads were doing with their kids and he didn't do with his. So he started doing a lot fo things to make up for those lost years. Now most of it involved money and what they would have enjoyed was physical time and hugs and kisses.

After he retired he then became even more mellow and thinking of others. then came the heart attack, then the very humbling ulcerative colitis and ileostomy. You lose dignity and you have to redefine yourself.

So through all of this he has become a different person than who he was many years ago. I loved him for the dignity he treated his Mother, the fact that even though I had MS, he said in his wedding vows that he would love me through sickness and health, good time and bad times.

Now he has Parkinson's, an ileostomy, has to resort to others doing things for him and knowing he has to treat those who do something for him have to be treated with respect.

So these 44 years have been a process, sometimes easy, sometimes hard and a lot of tears. Now he is learning how to give me what I call a Peterson hug. That's my family name and the big loving hug we give whether it is needed or now. He frequently gives it. And some say you can't teach an old dog new tricks!

So that's my story of 44 years of marriage. I have taught our daughters that in this world of easy divorce, you have commitment, you work for what you want, good times, bad times but it's what you find at the end is what important.

Well doydie;you stuck thru "thick and thin"; it appears a portion of those years was the "thin". Hopefully your daughters have learned love/commitment and good times don't always work in that order. But it appears these past few years Charlie has had to learn some lessons starting with "appreciation", as well as "some tricks".

You must have been very young when you were diagnosed with MS to have had it when the two of you married 44 years ago. He also showed what commitment/love is all about by taking his wedding vows quite seriously in spite of you having MS.


Gerry

I was 47 when diagnosed which I don't consider young. I guess I didn't state that right in my previous post. Maybe I needed a comma? I had read somewhere in the neurotalk forum of some one that had a marriage break up because of her MS. It was just much of a burden on the husband and he didn't want to stay with her anymore. Ihad asked my husband that night how he felt about it and he said that in our marriage vows he had said those words and he meant it. We were both healthy and active when we were married in 1972. Our journey has hit a crooked road and we have to stop and take some side paths now. But we decide together and am ready and waiting to get back on the straight path once more.

My oldest daughter has always wanted the kind of marriage my parents had. It was a beautiful marriage to model one's own from. So far they have succeeded in it. They are very open in their affection for each other which Christina saw that very often when she was around her grandparents. And she saw them go through sickness and health and still love each other just like the day they married.They had a very devoted marriage. Now Charlie's parents I think by the time our kids were born were on their 3rd or 4th marriage. All of Charlie's siblings are on their 4 marriage. I don't know whether our youngest would have stayed with her ex if he hadn't given good reason to divorce. She had lost all love and respect for him long before. But yet Christina and Paul waited until their wedding night to have any sex, they were both virgins. Michelle was living with her husband when they got married. Maybe to much TMI??? But it all explains their commitment not only to their spouse but to God

doydie,
When rereading the sentences; it makes perfect sense you were stating even though you had MS he took his vows very seriously. Both of you are obviously very committed to one another.

You were very fortunate to have loving parents. That most likely plays a significant role in the way you come across looking at things, even tho some might not have the best outcome, in a way that usually leaves me with a smile; including your maybe TMI??? You come across very open and not pretentious .

Hoping you are feeling stronger with more energy every day.


Gerry

Wow Doydie! You have both been through the wringer!

Glad to read there is improvement in your health.

It's so wonderful to read about a couple that has worked through the tough times and stayed together! Glad to hear things are better for you there as well.

Keep up the great work!

Happy Anniversary!

I am glad to hear you had a good and stable day! I hope it was the first in a trend upward for you.:hug:

How are you doing, Doydie? I hope things are continuing to get better for you. I have been praying for you!:hug:

Doydie - I hope all is okay with you. Please check in when you get a chance. I'm getting a little worried, my friend. :( You know how we all worry.

Keeping you in my prayers.:hug::hug:

Anyone know how Doydie is? Not been active for 10 days, I'm only recently new to stumble inn but I'm sure 10 days is unusual for her. Just got this gnawing feeling, praying she is alright.

I am really worried as well. It is not like her to not post something for over 10 days. Does anyone have any contact information for her? I sent her an e-mail via NT but haven't heard back from her.

I've been saying extra prayers for both her and her husband as things have been so crazy for them lately.

I don't have any contact info for her and don't even know her last name.

Hopefully someone will come along who knows something. I'm worried about her, too.

I don't have her last name either. I don't think. I know over the years we have done lots of exchange type things. I may have it somewhere.

sorry i don't. it is concerning. i hope she pops up soon.

Guys, I am so sorry. I am fine. My habits have completely changed and Stumble Inn was a desk top in the office habit. I have tried to go to bed much earlier and really don't go back in the office hardly at all. I know there have been times that I have tried to change this habit but some times I fail. I guess this last week was one of them.

My B/P is still a yo-yo, mainly in the high range. My cardiologist tried to put me back on the Hydralazine which sent my B/P really down the poop shoot and made me feel so bad fo several days. I told her I was not going back on that. So she increased the dose of one of my regular drugs. It still stayed high until today when I got up and took it and it was 116/64! I wasn't so sure I was going to like that and sure enough while I was getting my lunch together it dropped to 81/46. So I guess i need to break up my morning 2 pills and take them at two different times.

We had a death here:( We had our house built in 1978 and the handle on our stove has fallen off. My husbands idea is to duct tape it on, men:eek:, but I would really like to get rid of y avocado stove. The only things I will have left of that awful color is all of my counter tops and sink which is getting very chipped.

Had my annual check up with my neurologist yesterday. If you remember, my MRIs have stayed the same since diagnosis in 1997. She has mentioned many times if I should still take my avonex but just said if it ain't broke, don't fix it. So late 2014 I topped it since we were having to pay so much for Charlie's ulcerative colitis treatments. She didn't like it last year but inderstood why. So yesterday she told me that I am probably one of those very few patients that actually have a benign form of MS and probably never needed the Avonex at all. I'll take that.

I have felt well enough I no longer need to use the store scooters to do shopping. In fact it drives me crazy to go with Charlie. I can understand that Charlie has to walk slow with his Parkinson. But his total grazing around the store looking for something sweet to eat. I know we spent 20 minutes walking around the bakery and I am praying the whole time for God to give me strength over those fudge iced brownies, german chocolate brownies, cream cheese iced brownies, no bake cookies. but he ends up finally leaving not buying anything and got a candy bar in the check out lane. We went in to buy carrots, apples and cottage cheese. We came out spending $120 and had burritos, pizzas, duct tape and many other things.

Again, so sorry I left you guys hanging. I do believe we need to need a phone number or some sort of contact info.

I am so, so glad you posted. I have been saying double prayers for you. I am glad you are doing well, for the most part. Your bp this morning was great! I'm sorry it ended up dipping though. Those dips must be so scary for you.

I have not been on a DMD for several years now. I have had some ups and downs but my MRIs are still stable. I am glad to hear that you may have only had a benign MS or CIS. That is good news.

Again, I am so glad you posted and that you are okay!:hug::hug:

Doydie!! I'm so relieved you're alright. Thanks for checking in.....you know how we worry here.

I think a phone number list would be great. I hope we can get something organized and those that want to participate can do so.

My doctor said my new normal needs to be in the 140s/70s. So I knew what I got this morning wasn't good for me and then when I started to feel dizzy I knew. So I need to develope a new habit. Charlie takes a pill at 4 PM. I need to take one at that time and him taking one will help me remember to take one also. He has been so worried about me the last month I think it might help him to be the person who makes sure I get that pill at a new time. Now if I can just get him to change his ileostomy bag. I have told him if he could just do it one time so that I can see that he CAN do it. Then I would go back to doing it.

doydie,

I am glad all is okay. Other than Charlie not wanting to change his own bag; how is he doing with the lifestyle changes because of the ileostomy?


Gerry