Just weary

[PamMc]

I don't know if my blood counts have changed or what is going on. I see my oncologist/hemotologist next week for my usual yearly check. I only go yearly as my doctor has always done a good job of following up and alerting if anything seems off. Well I have a new doctor now and she isn't with the program yet.

I have been suffering from what was thought to be a double ear infection for two months now. I've gone through two rounds of antibiotics with no success and am now seeing an ear, nose, and throat doctor who thinks I may have an allergy to something. He also thinks my immune system may be down as a result of all this.

When this all began I also had blisters in my mouth. Well, they are back. They are in my mouth and throat. The culture when I first had them showed no strep or anything and I was treated with Magic Mouthwash. What is this? Why am I not getting rid of the ear ache in both ears, the headache, the sores coming back in my mouth, and the persistent tiredness?

I don't know why I wrote all this. I guess I just need to vent. I pray this is not the point where we go from watch and wait for MDS to actual MDS. I'm so weary. I don't want to be sick all the time.

[traceyn11]

Hi Pam,
Sorry you are feeling so bad. Ear infections are awful, so I imagine 2 feels really awful. Hope you get some answers next week.

[Cheryl C]

Hello PamMc

Really sorry to read that you've been so unwell. I hope you find a solution to the ear problems soon. It must be miserable. No wonder you feel weary. I can imagine it must be hard to sleep well.

Have you had your globulins checked? I used to get a lot of infections before being diagnosed with hypogammaglobulinemia and starting infusions of IVIg.

[PamMc]

Thank you for your thoughts. I have had nothing checked. I've been to my primary twice, who thinks it is virus, but never tested my blood. She gave me a nose spray the first time and then antibiotics the second time, then another round of antibiotics when I called and told them it had not gone away. Then they send me to the ENT.

I can't see to get my new primary to listen and realize I do know a thing or two. I believe my white cells are below normal again. At what level, who knows. I have had low platelets for 20 years now. Five years ago my white blood cells began going into below normal range. That's when they decided I am wait and watch for MDS. The trend of my blood cells has been that each year they go a little lower. I've made a graph and you can visibly see the downward trend.

I wish I had my old primary doctor back. She kept a really close eye on things for me. When things looked like I needed to go see my blood doctor, then she would send me to him. They worked well together. Now, to add to my frustration, the hospital group for which my blood doctor is associated with and controls even his private practice and all the others in the network will no longer be covered under the insurance I have. Now I have to find a new oncologist/hematologist. Next week I have to ask the doctor I love to give me a referral to a new doctor. This too is exhausting. My heart is broken.

I think I just need to get a bunch of sleep, but all the circumstances around me cause me to have difficulty sleeping. Too much on my mind. Mother has cancer, serious issues with grandchildren and trying to get them to a safe place, my husband has just this last year been diagnosed with Chronic Traumatic Encephalopathy (CTE), which is the disease all the football players are displaying and talking about. I just need a long nap and prayers.

Thank you for being a place where I can just go and let it all out. I'm sorry to sound like such a whiner. I have stayed upbeat and all for so long with all this, but now that my defenses are down, I am having a rough day or two. My step father says to take a day or two and wallow, then pick yourself up. I've had my days of wallowing, now it's time to pick myself up. Thank you for listening. I know your prayers will help me to get back up.

[Neil Cuadra]

PamMc,

When everything seems to hit you at once, that's when leaning on other people can be most useful.

Depending on where in Tennessee you live, you could join one of the Community of Hope support groups, in Chattanooga, Knoxville, Memphis, Nashville, or in a neighboring state like Asheville North Carolina.

We keep track of them in our Support Groups and Communities of Hope forum. Marrowforums members can also look for other patients in their cities using the Your Local Area forum.

Sometimes people in your own area are the best resource. For example, someone local might recommend good doctors in your area.

[curlygirl]

Don't worry about sounding like a whiner - you don't. We know exactly how you feel. My son was diagnosed with Aplastic Anemia in Apr 2013. He responded to ATG and cyclosporine and he started to relapse when we tried to finish tapering his cyclosporine. So they raised the dose and he started slowly getting better. Two weeks ago he got a nasty winter norovirus - threw up for 5 days. Got better for 2 days then developed a double ear infection and a fever. He's finally finishing his antibiotics. The two infections made his numbers wonky. His platelets went up from 75 to 107, but his hemoglobin dropped from 11.3 to 9.6. Who knows what to think of that. But just to let you know infections do that, if you bone marrow issues. So if you're feeling not well it can drop your neutrophils and then you're susceptible to other opportunist infections. Switching doctors is always hard. My son's pediatrician and his hematologist are about to go on maternity leave at the same time. I realize that's temporary but even that stressed me out. Luckily it's not the same as switching and the team of hematologists at his hospital are all very good. Good luck and I hope you find a new doctor, get answers, and feel better soon!

[PamMc]

Thank you for the information Neil.

Thank you for the support curlygirl.