Update-Sry I've Sick

Hello my fellow CP'er's sorry I've not been around and posting but man have I been sick. I mentioned about my Achilles tendonitis and how bad I felt, well on the 4th of July, I went to see a dear friend become a US citizen. Ended up having to sit in the full sunlight for over 1 hour, with LUPUS you can't do that and I've been sick as a dog ever since. Plus, I'm having a lot of other issues going on too.

I have been coming and keeping up on reading the threads but just haven't had the energy to respond and I'm truly sorry for that. I've been trying to get things completed around the house as our landlord needs to come and make a repair in our living room. Mind you it's not that the house is dirty, but I do see cobwebs better now that my right eye is fixed. I will have my other cataract surgery done on the 5th of August and can't wait. My pain levels are still through the roof and my situation hasn't improved a lot with my daughter. I've been giving her the space she wants. I'm lucky if I hear from her once a week, she never did ask how my surgery went.

I'm so frustrated with my Dr's. My PCM is out on vacation this week, and I'm in desperate need of another chest x-ray. I KNOW my ribs are broken on the left side again. I feel them pop when I move, and the pain is like a 12 out of 10 when I sneeze or cough. The last x-ray that was done was completed on May 29, ordered by my Rheumy. I had had my car accident on the 22nd and felt my ribs were hurt. I saw my PCM two days later and she couldn't read the x-ray as it was to dark to see things. The radiologist report is STILL pending and no response has been given to me.

Well I call my Rheumy today to try to get another x-ray, his nurse told me that he was leaving on vacation and I would either have to go to the ER or wait for my PCM to return. I asked when the Rheumy would be back and I was told August. Needless to say I'll be getting NO WHERE this week with my ribs nor my Achilles tendons.

I truly believe there is more than tendonitis going on in my Achilles, I noticed that I can not pull myself up onto my toes. You know, like trying to reach the top shelf and you go up on your toes, I can't do that at all. The ankles are very very swollen and my whole right foot is swelling. I'm worried that the scar around my skin graft of my right foot is pulling apart from all the inflammation it. I need to call in the AM for an appointment with my plastic surgeon to look at my foot. I'm hoping he'll send me to see an orthopedic Dr ASAP. I'm set up for Physical Therapy but don't start until the 29th of July. I'm wearing my splints at night while sleeping. I wear my ankle supports and have the heel cushions in my shoes. I'm staying off my feet as much as possible and I'm stretching my Achilles tendons six times or more per day. Still I'm in terrible pain and miserable.

Just wanted to say thank you for all your love and support. I'll keep you updated on everything as I try to get an x-ray and see an orthopedist. I also saw my dermatologist today too, the radiation on my thumb worked really well at first and it was looking so much better, well now the wart is back in full swing and my thumb looks terrible again. The Military Radiation Oncologist is unwilling to give me anymore radiation on the thumb. My Dermatologist wants me to see one of theirs at the Medical Center he's associated with. He's hoping that they'll give me more radiation. More to follow on that one, if they don't do something soon, I'm gonna get drunk and cut the thumb off at the knuckle myself with my meat cleaver, LOL. I told that to the Dr and his PA today, he said don't do that and don't lose hope, I'm not giving up yet, so you shouldn't either.

Will check in Wednesday, I see my Oncologist to hopefully get my game plan for my treatment of my leukemia. Oh please say a prayer, I received a notice in the mail from SSDI wanting for me to provided the dates, names, and reasons, for all appointments, tests, procedures, medications, surgeries, and hospital stays since June 2011. They asked if I was better, the same or worse, if I had worked or gone to school or did job training, and if my Dr. felt I could or could not work. After they receive all this info and their form back they'll let me know if I have to do a FULL REVIEW to keep my SSDI. Man I hope when they see how many appointments alone I have it will be enough for them to just approve me.

It took me over 3 years to get my hearing before a judge and another 6 months before I received my money. I really do not need any additional stress from SSDI. So, please positive thoughts and prayers. Thanks and I hope you are all doing well.

Hugs,
Barbara

Doublin' the prayers..

Thank you for taking the time & enduring the pain to update.. hope you get xrays etc soon.. you poor thing..

Please do not give up hope..

Come rant or vent or or ask for prayers .. whatever you need..

Barb, yes, I would mention the Leukemia dx as well, it won't hurt, and it might be enough to put things on the right track for you. With the records you have on hand, I couldn't imagine them even remotely thinking you were ok and able to work.

When my case was decided, there was no hearing in the end, even though my lawyer was well prepared, etc. The judge was highly agitated at SSD, and said in her findings, and this is a quote, that in my situation, "it was a no brainer" that I would ever be able to work again. And due to my age, and cancer prognosis, signed off on never having to be reviewed. For one thing, as soon as I turn 62, a year from now, the SSD will turn into regular SS anyhow.

You are younger than I had remembered, no offense, just hard to remember everyone's age, so I can kind of see where they would want to review you, but, your medical conditions are severe enough in my opinion, you ought to get waived as well. I hope and pray that is the case for you, as you do not need the added hassle and pressure in your life.

I remember a stupid letter I got from SSD before I was approved. They were telling me, that from my medical records, that I should be able to stand for 8 hours, work full time, be able to lift 40-60 lbs, etc. I actually laughed when I read it, because at the time, I was under strict doctor orders to stay off my feet as much as possible and was under a 10 lbs weight limit. It makes you wonder what kind of people are really looking at our records and true condition.

I told them to call my doctors and talk to them, they would be happy to tell you, but they said they couldn't do that, because my doctors might be in cahoots with me to get the claim approved. Like that makes a lot of sense, and like a doctor would risk his license over a patient trying to fake getting SSD.

david

Generally they do a partial or full review every 2 to 3 years unless you get special clearance to have it done every 6. So I wouldn't worry overmuch. With all your conditions and your recent health crises, the last thing I can possibly imagine is them not continuing your SSDI, they just have to ask the questions, it's routine for everyone.

Hi Barbara,

Thanks for the update. Sorry for everything that's been happening and the way you're feeling.
I'll keep you in my prayers and thoughts.

Hope you feel better. Keep us updated when you can.

Take Care

UA

I'm sorry things are still such a mess. I hope you can get some of the appointments scheduled and get a game plan.

Sounds like you have enough evidence for the review. I'm due for one next year. I was approved 3months after applying-never had to see an assigned dr or anything. I was 34 and I'm still amazed at how quick it went. Letter said a review in 3yrs. Unfortunately things are worse now than three years ago so I'm hoping it will be easy. Let me know how it goes. Obviously you can't work at this point so I would think it would be a no brainer.

Hi Barbara I'm so sorry that you've been so sick. Please don't apologize for not posting. We definitely understand.

I would definitely advise to tell them about the leukemia. I hope you can get a break soon.

My thoughts and prayers are with you.

love and hugs
Loretta

Well I saw my oncologist today and he first said to me, "you don't look to good", really I've been miserable for sometime now. Anyway, we went back to the office and he wanted an update on everything.

He looked at the x-ray that was done on May 29th and said, "yep, I can't read it either, I'll order another x-ray". Didn't have time to get it done today, will do it tomorrow. I mentioned the Achilles tendonitis in both my ankles, he asked what my PCM was doing to treat it. I said the standard stuff, the splints at bedtime, ankle supports during the day, heel cushions in the shoes, physical therapy, but not until 29 July. Told him I tried the voltaren gel, which does NOTHING for me. Mentioned the boot that was ordered, but I can't wear it as it affects my back to bad, plus it's near impossible to walk with boots on both feet.

I told him I can't pull myself up onto my toes at all and the pain all around the bone on the sides and back of the foot it terrible. I think I need an MRI of both feet, but he said to talk to my PCM about it. He thinks the best thing they could do for me is to increase my steroids, he said it would help with the swelling that's going on. However, he's not controlling my steroid use and didn't feel he could step on my Rheumy's toes. So, I'm still in the same spot I was. My Rheumy is out on vacation and I can't see him until August 25th I think. Oh boy, lots of swelling and pain for awhile I'm thinking.

The oncologist did say that my WBC are very low and that I had a fever today. Asked about chills and sweats, which I confirmed. Been having those for about 3 weeks now. He feels I've got a virus and it's affecting everything, says that's why I'm feeling so bad. Told me because of having no immune system I'll hold onto a virus a lot longer than the average person. He had labs drawn again to see if I may need some blood this week. Hope to hear from him in the AM.

Until, all my Doctors are back from their summer vacations, he wants to wait on ordering anything to try to help my leukemia. He wants to have a meeting with most of my Doctors. I did ask about changing my MTX to Cytoxan so that the Dermatologist could start me on an oral medication to help treat the warts on my hands. He said no not at this time. The last time I took Cytoxan I had a lot of complications and my bladder is damaged for good from it. So guess I'll have to do with just radiation on the thumb again.

Been busy trying to make up a spreadsheet of all my appointments, man hard to remember what every appointment was for back 2 years ago. Hope to send of SSDI forms next week, other than that nothing else new or planned for me. Came home and took a nap and now I'm thinking of going to bed. I hope you all have had a good night. Take care and I hope most of you are getting ready to go to bed or are sleeping.

Night,
Barbara

Hi Vickie,

Don't you just hate it when the thought is there one minute and gone the next LOL, I do it all the time.

Yes, he did take a pass on everything, I was VERY disappointed with him. He did email my labs to me, my WCB was 2.4 which is LOW, he said you must still have the virus. I'm not so certain, all I know is I feel terrible.

My HBG is 9.3, as you know most hospitals don't give blood until your in the 8.2 range or so. Because of my respiratory issues my cut off for blood transfusions is 9.0, so I have to wait until I'm down to 9.0, real bummer huh. I'm short of breath, weak, very fatigued, and feel crummy, but I need to still drop more and feel worse, before getting some blood.

I was really UPSET with him this afternoon, once I finished my appt in oral surgery I went by Radiology to get my repeat x-ray. Stood in line for 10 minutes waiting, finally get to the lady and she informs me there isn't an order in the system for an x-ray.

Talk about being livid I made sure I told him how much pain I was having. Tried to reach him after leaving the department and still haven't heard from him.

I swear sometimes I think Doctors don't listen to us. I know how my ribs felt back in February when they were broken, they feel the EXACT same way now. If I don't hear from him tomorrow, guess I'll visit the ER.

My feet and ankles aren't feeling any better. I think I've tried everything out there. Anyone have any suggestions for some much needed pain relief on the bones of my heels and my Achilles tendons?

I'm gonna go now, take a hot shower and climb into bed. Hopefully, I'll stay asleep tonight. Thanks for asking about me Vickie, I really appreciate it.

Question for you, how are you feeling, after your ordeal with comming off your medication due to your QT interval being extended? How extended is your QT interval? Did they make you back off on the drug? If so how is your pain doing?

I have NO intention of coming off my medication. I asked my pulmonolgist about the drug induced coma and the ketamine infusion for a week. She said "NO WAY IN HE!! WILL I APPROVE THAT!

She said if I were healthy and only had pain issues, maybe so, but I'm a complicated case with SERIOUS lung and heart issues, she feels my being on a vent for a week is a huge risk to me. Possible infections, more importantly she's afraid I will not wean off the vent 7 days later.

So no need to worry about me going through the WD on this medication. The down side is they won't increase my dosage on this drug, because I'm at my limit for the extended QT interval. Not sure what will happen for me pain wise.

My pain isn't being controlled and I'm having a hard time keeping sane because of it. Someone is gonna have to budge and increase my dilaudid OR give me something else. If you think of the question, plz ask away.

I'm off now, hope you have a good night Vickie and I hope you are feeling well and having low pain levels. Thanks again for asking about me.

Hugs,
Barbara

Ugh-sounds like a whole lot of talk and not a lot of action. You should be frustrated.

With the Cytoxan, would you be taking pills or by IV? I know it's bad for the bladder, but does the IV form mess with the bladder less than the pill form? I did the oral form for a few weeks when inpatient up here at home. Cytoxan is not used by any rheumy up here at home. Local rd agreed to prescribe pills until I was discharged and made it down to Duke. Then I made monthly trips for infusions.

I so hate that you pain is not controlled. I feel like I've reached a point where the pain is controlled just enough so that I can be a mom, but not enough for me to ever forget that it's my constant companion.

Keep an eye on that fever. If you are neutropenic(which is below 2, right?), you need to get yourself to the hospital.

I hope something turns around for you and that pain can get controlled. It just chips away-bit by bit. You must be physically, and mentally, exhausted. I know I would be....

While you may be exhausted, you are strong as well. I read what you are going through and it gives me strength when I feel overwhelmed. Thank you-but I hope things improve for you, and quickly.