Update, still among the living!

Try not to over do things yet, it's still too early for that. maybe just do what you can each day.
Hope things are healing up for you.
Continued prayers...

Hey Joy, Loretta, Chart, and UA:

Thanks for the well wishes and reminder not to over do things. I'm trying to do things slowly, I'm fighting with the military hospital about my PT and still haven't begun it. I'll be 9 weeks post op on Friday and haven't seen a PT therapist yet. It's a good thing I did PT on that foot for a year before the surgery. I'm just doing things that seem like common sense.

As long as I'm not having pain when I do it, I go ahead. If there's pain or swelling, I stop and use my walker or crutches. I did walk thru the grocery store today while holding onto a shopping cart. My foot hurts tonight, but I think it's from all the walking. It's my lower back and hip that are hurting like a you know what.

Even though I purchased a device called the Evenup to try to level me out with my boot, I'm still off when I walk. Needless to say, my back and hip are taking a beating because of this. Then I've done something to my right shoulder, what I have no idea, I don't sleep on my side and the shoulder and arm are so sore I can barely move my arm.

As I mentioned I upped my steroids last week and started to feel a lot better, but my Rheumy made me taper back as of today. I feel terrible already and it's only been 24 hours since I had my dose of 30mgs. I have no idea how I'm going to manage things. I'm also having issues with chest pain again, and I needed to up my oxygen a bit.

I think a lot of it is that I've not done pulmonary rehab since like Mar. The lungs are just getting weaker and weaker. My pain is shooting thru the roof and I'm beginning to hate my life again really bad. Today, I had a group of dermatologist examine me. I mentioned that my dermatologist thinks I may have vasculitis. The biopsy results were negative tho and he feels that I need a deeper biopsy.

Well, they had 50 Doctors come and see me in his office today. Then they will have a meeting and try to figure out whats happening with me. It's a teaching hospital so I had Professors, Staff Docs, Interns, Residents, medical students, and my last 5 were Alumni Docs. They had to be between the ages of 70 to 90 LOL.

The one kept going on how my mood was positive and good. That I was pleasant and not mean, even once he left the examine room I could hear him going on about how I had a good attitude. I have to say I sat in the room and laughed, little does he know. What else am I suppose to do? If I'm ugly with them, they get ugly with me, the same with when I'm in the hospital. I hear for as sick as your are, you're very nice and patient. I guess I am, why make my situation any worse you know.

Anyway, now I'm waiting to see what the dermatologist have to say about the rash. When one of the Doctors was taking photos of my body, she found another area started on my other leg. I just want to know whats on me and how do we fix this. All I know is as of right now I feel so sick and have so much joint pain I truly wish that I would just go to sleep and never wake up again.

I know that won't happen, but I need a break and I'm not sure where I'll get it from. I'm seeing a pain therapist weekly and I do my meditation twice a day and I just can't seem to feel any better, unless I'm taking 45 to 50mgs of steroids daily. Of course, that has it's side effects on me then, I've been so weepy and I miss my CAT so bad. I WANT A CAT TO SNUGGLE WITH, my family just doesn't seem to get it that I"m so lonely with Grady here with me.

My daughter will leave on Friday to return to college and I won't see her again until most likely Thanksgiving. Hubby is gone all day long at work and I sit here alone. So, for now I'm a crazy bird lady and sit and watch the doves eat bird food from the feeders up in my tree. I've put a net under the feeders to catch any spilled seed. They've figured out that they can land in the net and eat out of the feeder LOL. It's a hoot to watch, never thought I'd see Morning Doves eating out a bird feeders.

Well, that's the news here, please pray that my pain lessens somewhat. That I somehow can figure out how to get out of visiting the in-laws and finally just let some good luck come my way just this once. You all take care and I hope you're all feeling somewhat better. Take care and you're in my thoughts and prayers.

Hugs,
Barbara

50 Drs! What a popular woman you've turned out to be. And we can say, "We knew you when..." lol

Hugs

Hey there Joy, Lynn, and UA:

Thanks for your support. Yep, seeing that many Dr's in one day is more than I really care for. Even though the last 5 Doctor's were the best of the day. They were all between the ages of 70 to 80 something.

I'm still feeling really BAD. My pain is sky high, my shoulder hurts like you know what and my arm is killing me. Still haven't figured out whats wrong with it. I see the foot surgeon on Monday and before he focused on the foot and ankle, he was a regular orthopedic Doctor so maybe he can tell me about this shoulder pain I'm having.

My back pain is really bad and I'm just ready to just cry Uncle and give up. The pain is awful and I'm losing my mind daily cause it seems like it's the only thing I can think about and it causes me to get so depressed. Well enough of me fussing, I'm going to head for bed. You all have a great weekend and I'll update over the weekend.

Love,
Barbara

Barb,

As you probably know, I came back to HW, at least for now.

Wanted to check in with you, and as I fearfully expected, you are still in a major pile of doo-doo with all your pain issues. I am so sorry to read of this, but there was no reason for me to think different with as many tough issues and maladies as you face on a daily basis.

If you haven't thus far, I started a new thread today, based on my visit today with my PCP about all my major and rapid weight loss. I have lost over 80 lbs. since the first of the year without dieting or exercising, and I am now down to 140 lbs. with all my ribs and bones sticking out like a skeleton.

They are not sure what is wrong, wasting disease ( cachexia) is being suspected at this point. I am off for new x-rays in the morning, had additional blood work done today.

I have lost all sense of hunger and appetite for 4 1/2 months now. There is literally never a time during this period that I have ever felt hungry. I have to force myself now, to even eat one small meal each evening. And most times if I do eat, it comes right out the other end, after a prolonged series of painful stomach cramps.

Yet the Gastro doctor, after running upper and lower scopes, says he can't find anything wrong. Isn't that amazing.

My normal chronic pain isn't any better with all this weight loss. Like you, my back aches are becoming the most disability thing I have going on. There are times, that it can almost bring me to tears, they are that bad.

We need to catch up soon. Just wanted you to know that your personal pain-buddy is back on duty, and I will be staying in better touch with you.

Praying and hoping you are sleeping at this time, being nearly 1 AM. I am in too much pain right now to even pretend I could sleep. Bless you, my dear friend.

David

Hi UA, David, and Diane:

Wow, David and Diane you both seem to be having a VERY DIFFICULT time right now. I'm so sorry to hear this, David I've been following your thread in the PC forum, I've just not been able to respond as often as I wanted.

Diane, I was really starting to get worried about you, I'd emailed you a few times and had no response and I just knew something wasn't right. I'm sorry that your family has DROPPED THE BALL with you and your care. It's a shame that we have to rely on friends to care for us. However, I'm very, very grateful that you have a friend that was willing to step in and take control of things. I hope by now you're feeling somewhat better, if you get a chance send me an email and let me know the whole scoop.

UA, it sounds like things are going okay for you. Yet, I know that those feelings can be hidden really well. I know that you've been through a very difficult time. I promise you I'm not trying to give up, but I just feel so bad right now that I want crawl in a whole and never come out of it!

David, yes we need to catch up but I'm not going to be able to until tomorrow most likely. I'm sorry that I just feel crummy as can be. Hopefully, tomorrow will be a better day and I can send you a an update.

Well, my foot is totally killing me yet again. I'm totally out of my boot and walking with an ankle support, compression sock. I also have a heel lift in the shoe, as my surgeon doesn't want me to put full weight on the tendon attachment site. The ankle sock make the calf muscle hurt pretty bad as the whole ankle and foot are so swollen.

Of course, my lupus flare up is still going at full blast and I'm getting NO WHERE. I see my PCM on Thursday and I get blood work for my Oncologist to review. The rash that I have they are thinking it might be lupus panniculitis and I'm not seeing any thing looking what there prescribing.

Then to top everything off, I've done something to my shoulder and I'm not sure what. I went to the urgent care clinic on Wednesday. Now, any of you that know me, I hate going to anyone but my PCM. I go to a Teaching hospital and if I go to the urgent care clinic, I get the new Dr's that just graduated from Medical School. Which is what happened to me on Thursday, the person I saw on Wednesday was a NP and she couldn't give me a shot of steroids in my shoulder.

So she made me an appointment for Thursday, the Dr that saw me graduated this June of 2014. She examined me and left to discuss my case with the staff Doctor. They both arrived and she checked where the intern marked my shoulder for the shot and the intern gave me the shot. YEP, IT HURT, she gave it w/o any numbing medication prior to pushing the needle into the shoulder joint. Sorry, to say that as of now, my shoulder is still hurting and I'm not sure what to do know.

I've been told I may have a torn rotator cuff in the shoulder. Of course, that will require surgery to correct it. Of course, that just what I wanted to hear. So, yep I'm depressed and in severe pain all the time. I wanted to be feeling so much better by now, but I don't ever seem to get my wishes met.

Well, I'm going to go, I'm going to try lay down for a bid and stop my pain I've been up since 5am this morning and it's now 12:45 am. So goodnight my friends thank you for checking on me, I miss you all and I'm glad to see you back. David, I hope they figure out something with your weight. Diane, I hope you get to feeling better really soon. I'm glad that you have help and please email me we'll catch up. UA, you keep hanging in there and doing alright.

Take care all and have a good night.

Hugs,
Barbara

Hi Barbara,

Thanks for the update. I'm glad to hear that the boot is out. Please remember to take it easy on the foot and rest it as well. I'm sorry they didn't numb the spot before injecting you. That really sounds painful.

Sorry about your pain. I hope you'll get some pain relief soon.

Sending prayers and thoughts your way.

UA

Hi Bugsmommy, UA and David:

Bugsmommy thank you for your prayers, I'm always willing to take any and all prayers that people want to say for me. I thank you and I'll say a prayer for you and your family too.

UA, as always I'm thankful for your prayers and checking up on me. I can't explain how important my friends here at HW are to me. I really have siblings that act like I'm not alive and we rarely are in contact. Yet, you and the others here check to see how I'm doing on a daily basis, I can never say thank you enough to everyone here.


David, my friend I'm so very worried about you and I'm thinking that you may need some TPN started. I know that the risk of fungal infection risk is so much more higher, but you can't continue on this way. Your organs are eventually are going to start to fail. I hate it that the Doctors have zero ideas as to what is causing your loss of appetite and now almost 100lbs of weight loss this year.

As far as the VA and your dental work, that doesn't surprise me in the least bit. I mean the military and VA has always been a hurry up and wait type of deal. I know it took me 1 year to prove to the surgeons at Hill AFB that I needed my gallbladder removed. For 1 full year they let me PASS all my gallstones, and have attacks so badly, I'd be tucked up in a fetal position on the bathroom floor screaming and crying.

I would recommend that if they don't get to you in the next month, I'd contact them again and just ask how much more time would it be for the removal of your teeth. Also, if your oncologist or PCM do not recommend something for nutrition for you, I'd suggest you talk with the VA Dr, and see what they have to say.

Oh, one more thing I noticed that you mentioned that there's some worry of a blood cancer of some sort. Have any tests been run yet? I know several years ago my PCM ,KNEW, something was going on with me other than my RA/Lupus/Fibro. No one could figure it out though. So, a bone marrow biopsy was performed on 3 different occassions. Then she referred me to NIH and they oncology department there did a biopsy, and low and behold my Hem/onc found my LGL leukemia. I'm suggesting you get bone marrow biopsy done, now they are not pleasant by any means. Actually quite painful, but as far as you've come now, with NO answers to why you're losing all this weight, the biopsy is well worth the pain in my mind.

As for me, I'm not doing well at all. It's currently 2:49am and I'm still unable to sleep because of the pain I'm in. My foot is killing me and I don't know WHAT TO DO. It looks and feels like the fat pad which cushions my heel, moved during my surgery, I'm now walking on bone covered with skin. Talk about hurting when walking. even with shoes and a heel cushion inside the shoe, and my foot in an ankle support, the pain is thru the roof.

Then my right shoulder isn't improving at all. My PCM, when I saw her on Thursday, she told me that I could have bicep tendonitis and that only my Rheumy or an Orthopedic surgeon can give me the shot in the front of the shoulder to see if we can relieve some of the pain there. I would also have to do a lot of PT to try to fix the shoulder. If that's not the case after I've done the shot and PT, she will order an MRI to see if I've torn my rotator cuff, or labrum in that shoulder. She said that I could possibly get by w/o surgery, but I might need it too.

My lupus is flaring up big, big time, I'm having constant chest pain and shortness of breath. They increased my prednisone until I see my Rheumy on the 28th of August. so hopefully, he'll have a solution and get me feeling better. I had to have my labs drawn on Friday, they took 20 vials of blood and urine, I'm praying that something shows up and they can see I'm miserable and need something to get me better.

I'm actually worried that it may be my LGL Leukemia becoming unstable. I've had a swollen lymph node in my neck under my jaw for about 8 weeks now and it's quite painful to the touch. My throat is sore and it's hard to swallow anything at all, my joints are painful 24/7, I sweat very easily just walking thru the store will start it up. I have to change my pillow cause the pillow case is soaking wet, I'm running fevers, I'm fatigued to the max.

Hubby said I sit down to talk with him and I'll drift off to sleep within like 5 minutes of sitting down to talk with him. I'm not sleeping well, and I've fallen asleep several times sitting at red lights in traffic. My breathing issues are worse too, and I'm always on 3 to 4 liters it seems. I used to use only 2 but now that's not happening to me and I'm just falling totally apart. I know for sure in my mind, that if I were someone's PET, I'd have been put out of my misery LONG ago. Just don't know how much more I can take.

Well, I guess that's all for my update, sorry it was so long everyone. I see my Rheumy on Thursday this week, hoping and praying that he can tell me something showed up in my labs and this is what we need to do. Heck just a 5% improvement I'll take at this point, I'm just to to miserable.

Take care David, and email anytime you feel like it. UA you take care of yourself and thank you for cheeking up on me. I hope that you're feeling okay and that you're not having to much pain. I'll check back in and give another update in a few days.

Hugs to you all,
Barbara

Do be careful, Barbara, I'm very worried about you.

Barbara

Thnx for the update but oh dear I too am so sorry you are having such an awful time of it hon !!

Praying for you
& asking for yours

Maybe try to get out for dinner over this Holiday weekend, as a short break from being cooped up... Really feel your blues and sure hope your feeling better soon, maybe just go to petsmart or petco and pick out a cat, you don't have to get a kitten. My daughter just adopted a 2year old cat. Plus with an older cat it won't be as playful ...wish I could help you pick out a new cat, I'm a vote for you...so 2 votes to 2 votes, you win...

Many prayers...

Sneak out if you can and get a cat and just tell everyone you found it crying outside...

continue prayers for you and hope I made you smile, a little...