Well I've gotten thru this week

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/5/2013 9:44 PM (GMT -6)   
Well I've managed to have several appointments this week, but have a totally free day tomorrow YAY!!

Today, I went to the Dr and they removed my cast and checked my skin and felt how my ruptured tendons are doing. Dr said the tendons feel as if they are starting to become intact again, and agreed to allow them to lift my foot upwards more towards a 90 degree angle, not totally there but better than before. The bad part was they had pulled my foot downward and the cast was pinching my big and little toes. They are red, swollen, black, and blue. The underside of my little toe is numb on the ball of the foot.

The big other bummer was when the corpsman was cutting the cast off he went to deep and nicked me. I jumped and he said "it's not sharp enough to cut you", well once the cast was off guess what? He did manage to cut me right over my ankle bone. I'll wear this cast for another 2 weeks and go back for another check and will find out then if I need another 2 weeks in a cast or if I can go into a boot.

I'm hoping and praying for the boot. As on the 25th of September I'm going to be having some I guess not minor but no where near major GYN surgery. It would be very very helpful to be in a boot at that point instead of a cast. I will have to spend the night in the hospital for the surgery, but if all goes well and they can control my bleeding alright I should come home the next day.

I managed to complete my PT appointments, but, my right Achilles Tendonitis is worsening as I'm putting more strain on it. With my left tendons ruptured and needing the cast and crutches, my poor other foot and back are now in terrible shape. skull skull

I managed to get into see my therapist and have to admit I had a total melt down in her office yesterday. I guess things are just beginning to feel overwhelming to me and it just bubbled right over. She managed to calm me down and allowed me to vent it all out w/o her freaking out and admitting me to the nearest mental health inpatient ward.

I was also able to see my pulmonologist yesterday. That didn't go as well as I had hoped for. She did confirm that I do have a mass in both lungs up at the tops of them. She thinks it may be pneumonia, but, I'm having zero symptoms of pneumonia. So, her game plan is this, since I'm at high risk of lung cancer due to being exposed to VERY HEAVY 2nd hand smoke until I was 20. Then also having NO immune system puts me in the High Risk category, plus already having leukemia. I'm to have a PET/CT the first week of November and then see her again.

If I were to get worse or become ill with symptoms of pneumonia I'm to call ASAP. If nothing changes I'm to have the PET/CT scan, if the masses are still there and haven't gotten smaller, then the plan will be to do a lung biopsy of each mass in each lung. Once that is done, depending on how she feels the report is, I stand a pretty good chance of her requesting the surgeon to go ahead and remove the masses anyway from my lungs.

I'm really not sure how I'm feeling about all of this. I guess the thing that bothers me the most is IF it is pneumonia, why aren't they treating it with antibiotics? Also, if she's gonna most likely have them remove the masses, why put me thru the biopsy? She doesn't know that I"m totally unwilling to do the biopsy w/o them giving me general anesthesia. I have spent time in the ICU on a vent and I just can't go thru this procedure with sedation. I just physically and emotionally CAN'T HANDLE another invasive test period. My PCM is aware of how I feel and she said I'm not going to tell your pulmonary Dr you said that. I think I'm going to have a battle ahead of me.

I have to say that I'm really struggling with things right now. I've got a TON of issues going on at home, poor Lynnwood was dumped on by me today via the phone. Lynn I'm sorry I kept you on the phone so long and I really shouldn't have let it all out. Please forgive me, I'm just feeling so alone and like such a HUGE BURDEN on my family right now. Then pile all the health related stuff on top I feel as if I'm going to have a total nervous break down period.

I can't help but blame this stupid disease for all of my woes now. I'm ALWAYS second guessing myself about taking the drugs I have to try to treat this disease. Did it help my lupus no way, did it cause my leukemia and now possible lung issue, quite possibly. Was it worth it I'm thinking it wasn't. It's really hard right now not to think that it's just easier to throw my hands up and cry UNCLE. I just feel so overwhelmed I can't do one more test or procedure. I can't handle one more issue or problem at home, I just want to run away to a tropical island by myself and just be.

Anyway, that's the update on me I've got thru the first two weeks of having this dreaded cast on my foot and am so looking forward to getting it off and as fast as possible. I just hope that I don't rupture my other foots tendon and that my back doesn't totally give out on me before I'm well.

Take care and have a good night.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/5/2013 9:57 PM (GMT -6)   
(((((((((((((((((((big, big, gentle hug))))))))))))))))))))

You've had a rough week. I'd think I would want to run away to a deserted island and just enjoy the solitude myself. There's only so much a person can stand before they melt down and you have an inferno on you.

Hang in there and I hope you feel better soon.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/6/2013 7:27 AM (GMT -6)   
No problems, Barbara, just sorry my phone battery started beeping at us. Hope today is a better day!

And Couchtater - if I'm going to run away to an island, I'd rather it be a tropical island populated with service people to provide food, massage, and other great services!!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 9/6/2013 12:27 PM (GMT -6)   
 
Hi Barbara,
 
       A very gentle, but big (((((((((((((((((((((HUG))))))))))))))))))))))))))).  I do really want to call you some day soon.  How do I get your phone number????   An island sounds good, but I think I would rather be in the mountains someplace, with a beautiful lake to gaze at.....but like Barbara said, with amenities near by. :-) Love, Laura

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1037
   Posted 9/6/2013 2:32 PM (GMT -6)   
I hope you feel better today. I understand how you feel. My life this year has been filled with dx after dx. sending good thoughts and prayers.
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

Moxiesbuddy
Regular Member


Date Joined Jul 2013
Total Posts : 37
   Posted 9/6/2013 2:58 PM (GMT -6)   
Bless you, Barbara. There's just so much a person can take and it sounds like you've suffered in many ways. I hope you had a good "free" day today and time to rest and relax. I'm praying for waves of healing to restore your mind, body and spirit. Have a much better week coming up.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/8/2013 3:24 PM (GMT -6)   
Hi Joy, Lynnwood, Laura, Teddtlove, and Moxiesbuddy:

Thanks all for your continued support. I know that if I didn't have you all, I'd really feel in a deep, dark place. I managed to go out with hubby yesterday afternoon. That was my first trip outside of the my home or the Dr's office or therapy. I was going a bit stir crazy I think.

We didn't do a lot, just went to Target and then to the commissary to shop for groceries. It was nice to get out and away from the house though. I hurt so darn bad though I'm not sleeping well at night. I was up until 3:30 this morning and then my cat had me up at 6:30 to feed him. He then decided at about 8:45 I just plain and simple needed to get up with him.

Needless, to say I'm really tired today. I know I didn't get enough sleep, I'm hoping to be able to have a shower later and maybe read some and go to bed early tonight. I have PT on Tuesday and Thursday, and I do my medical clearance for my upcoming surgery on this Thursday. My surgery date is the 25th of September. Have to say I'm still hurting real bad. My left arm all around my elbow is sore as heck. My back is a total mess and they don't know what it take to fix the darn thing.

Very frustrated that I really can't go out about anymore. It's hard to get out of the house with crutches. I'm worried as is hubby that I'm going to fall going down the front step to the sidewalk. He's afraid I'm going to "face plant" nono nono while stepping down and break my nose or something.

Laura I would love to talk with you anytime. Yep, the time difference is there but that's ok for me. My email address is listed in my profile. If you'd go to my profile and get my email address and send me an email. I'll be more than happy to send you my phone number.

I hope you all have had a good, safe, pain free, happy, and feeling well kind of weekend. Please take care and be good to yourselves during the week. Make sure you rest and listen to your bodies. Have a good week and I'll keep you updated once I know more.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/9/2013 10:12 PM (GMT -6)   
Well today has been a hard one for me. I've had a ton of back pain, I know using the stupid crutches is killing my back. Can't seem to get my Doctor to call me, I'd like for her to give me a muscle relaxer again and order some PT for my back.

I managed to sit outside this evening and watch my hubby wash the mistresses LOL. They always come first rolleyes rolleyes he can't seem to help himself. He had both of them in the driveway giving them as much need wash as he put it. I sat in a chair at the end of the walk and watched LOL. He also helped me into our back yard, so I could show him where I wanted my bird feeders moved to. I love to watch the birds come and eat during the day and early evening.

Once we came into the house, I wanted a shower so he again helped me out. He bought a cast cover for me about 10 days ago. I highly recommend them if you ever break something and need to wear a cast. It was $35.00 but a well spent $35.00. I can't think of anything better when you're feeling really bad than having a nice shower. That's hard to do with a cast on, this has allowed me to shower w/o getting my cast wet at all.

I got myself settled into my chair with my oxygen. Had a bit of trouble with my breathing while I showered. Even though I used my shower chair I was totally out of breath and needed to up my oxygen to 3 liters. As I was sitting in my chair I decided I needed some tylenol for my back pain. Hubby went to get it and asked what was wrong with me. Told him I had a bad backache, he came over to give me the stuff and leaned down to kiss my forehead and said noted that I was hot. He said "no wonder why you feel bad you have a fever". I normally never feel hot to the touch with a fever and said "NO WAY". Well I had to get my temp taken and he was right.

I've been sweating all day long and just not feeling right. Can't help but wonder if in fact my Dr is correct and the masses they see in my lungs is pneumonia. Someone from the CP forum mentioned a specific pneumonia that caused her a lot of sweating but no other symptoms. Guess I'll have to call the Doctor in the AM depending what my temp is. I'm not going down to the ER tonight, I just don't feel well enough. The bad part is, last time I had pneumonia I went to bed on Saturday night at 11pm and woke up pulling my ventilator tubes out of my throat on Tuesday early evening. I only remember going to bed, hubby remembers finding me unresponsive with foam in my mouth.

He's tossing and turning in the bed now, I can tell he's not going to sleep well. Hopefully, there will be zero problem thru the night. Just wanted to give an update on how I was. Hope everyone is doing well and that if you're having pain, I hope you have something to take for it. I hope you all have a great day tomorrow with no pain, no stress, and no fatigue.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/9/2013 11:20 PM (GMT -6)   
You know you need to go to the ER when you're too sick to go, Barbara.

Please let us know how you're doing in the morning.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/10/2013 7:53 AM (GMT -6)   
I do hope you got some sleep and are feeling much better this morning!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/10/2013 6:57 PM (GMT -6)   
Hey Joy and Lynnwood:

I managed to fall asleep around 4:30 this morning and was up at 6:30. I'm kinda dragging by now, I really haven't felt well at all today. I had PT at 1:00 this afternoon, and while I was up getting dressed I noticed that I started wheezing, I was sweating so badly that my hair looked I had just washed it, and I was really short of breath. I went on to PT as I have to give 24 hr notice prior to canceling the appt.

Of course, getting out to the car and getting to PT I was in the exact same condition as I was getting ready. Repeated it on the way home, still feeling really crummy. I did call and leave a message for my Dr but they are allowed 24/72 hours to return my call. Since she's only in the clinic one day a week, I'm guessing I won't hear from her until Thursday. So, I'm going to email my pulmonary doc just before I go to bed. Hopefully, she'll call or email me right away first thing tomorrow.

It may not be pneumonia that's affecting me but my hemoglobin may be so low that I'm having the more serious side effects of anemia and may require a blood transfusion again. I swear I'm a vampire and all I do is get blood LOL Hubby commented awhile ago that my eyes are are swollen and very dark all the way around them, major dark circle underneath. I just don't feel well, I don't know, but I think it's the leukemia that's causing issues for me right now. sad sad Since my leukemia can't be cured I'm really not sure what they can do for me, except give me blood when I need it and help boost both red and white blood cell counts.

My oxygen levels are low tonight been sitting in the same position for at least 45 minutes and my heart rate is 125 and my o2 level is 88%. Those aren't good stats, since I just took those, I'm now really leaning towards I think I need some blood. I'm due to see a Dr on Thursday morning, I'm supposed to get lab work done and a chest x-ray 2 hrs prior to seeing the Dr. He/she is suppose to clear me for my surgery on the 25th. Guess I'll see what my pulmonary doc has to say first, if she responds tomorrow. She's allowed the same amount of time as my other doc so who knows when I'll talk to a doctor.

Other than that everything is the same here. Hope you both had a good day and didn't have to much pain. I hope that you can sleep tonight. I think I'm gonna try to go on to bed and rest for the rest of the night.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 9/10/2013 7:11 PM (GMT -6)   
 
Hi Barbara,
 
     You are such a trooper!   With everything going on with you, you always manage to send out warm thoughts for everyone else.  Just your word, even if not directed at me specifically, help.  Please do get lots of rest and take care of yourself.   I am sending you lots of gentle ((((((((((((((((Hugs))))))))))))))))).
 
Love, Laura

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/10/2013 8:07 PM (GMT -6)   
Barb,

Had to come over here and read your latest, not sounding so good, more and more being piled up on you, don't know how you handle it sometime.

Somehow, I hope you can have a somewhat decent night, will check with you tomorrow.

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

TXplowgirl
Regular Member


Date Joined May 2010
Total Posts : 66
   Posted 9/11/2013 1:22 AM (GMT -6)   
Hi Barbara, I've wondering how you were feeling.
 
I wish there was something I could do for you.
 

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/11/2013 9:14 PM (GMT -6)   
Just a quick update I'm going into see the Doctor in the morning. My regular Doctor hasn't returned my phone call, I really didn't expect to hear from her yet. However, I did call my pulmonary Doctor this morning, she phoned around 2pm. Told her I was to be seen tomorrow for a clearance for surgery.

She said keep the appointment and then come to her clinic before 2pm. She's leaving for a meeting at that time. She's been caring for me since 2006 so she knows my history well. She thinks that my anemia is so bad that my hemoglobin is most likely down in the low 8"s or high 7's.

If that's not the case, she'll want to look at the chest x-ray that will be done, and look at my WBC too. She also mentioned that I'm always having issues with percardial effusions and I may have one that's big enough to cause me some serious issues. So, will see what happens tomorrow, I trust her and I know she will get a hold of whomever I need to treat what's going on.

I'm taking my iPad with me so I'll be able to put in a post in case I'm admitted. Hope you are all well and doing fine. I'll have to be on the road early and who knows what time I'll be home.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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